Male symbol in yellow and blueWhy
are autism spectrum disorders (ASDs) so much more common in boys than in girls? To answer this question, researchers are exploring
how gender-based differences might contribute to a vulnerability to ASD in boys -- or to a buffer providing some degree of
protection in girls. What factors make boys more likely to have an ASD? What takes place during development, perhaps even
in the womb, which could result in more males than females later exhibiting autistic traits? One theory is that people with
ASD have "an extreme male brain," and that this may be the result of exposure to high levels of fetal testosterone.

The Autism Spectrum: A Preponderance
of Males

In many ways, males appear to
be more vulnerable to life's hazards than females. For a variety of reasons, both biological and social, they are more prone
to death or damage before birth, more likely to suffer accidents or fall victim to violence, and have a shorter average lifespan
than females. 1 2They are also more likely than females to have autism, pervasive
developmental disorder not otherwise specified (PDD-NOS), Asperger's syndrome, or any other type of ASD. 3

In the first clinical account
of autism in 1943, psychiatrist Leo Kanner noted that boys with the condition outnumbered girls by a ratio of 4 to 1. 4Similarly, in 1944, when Hans Asperger described the syndrome that would come to bear
his name, he initially found it only in boys. 5 The impression that there are far more boys with autism than girls, and that
this is even more striking in Asperger syndrome, has not changed much in the years since. Recent studies continue to show
that the ratio of boys to girls with autism is about 4 or 5 to 1, 6 7while the
ratio of boys to girls with Asperger's syndrome is between 6 and 11 to 1. 8 9

What no one has been able to
discover yet is why.

Autistic Traits: Male Plus?

It is not just that there are
more boys than girls with ASDs. Researchers have also noticed that there is something "male and then some" about the way individuals
with ASD think, act, and cope. Asperger himself speculated that the characteristics he saw in his young patients could represent
an "extreme variant of male intelligence."10More recently, Simon Baron-Cohen, a prominent autism researcher at CambridgeUniversity,
has proposed the extreme male brain theory of autism, which attempts to explain the remarkable similarities between traits
generally associated with human "maleness" and traits associated with the autism spectrum. 11

What are these traits? For one
thing, typically developing males tend to show strengths in mathematical and spatial reasoning and the ability to discriminate
details from a complex whole. Compared with typically developing females, however, males tend to be at higher risk for language
impairment and at a disadvantage on social-judgment tasks, measures of empathy and cooperation, and imaginary play during
childhood. 12Many of the traits associated with ASDs could be thought of as
an extreme profile of "typical male" strengths and challenges. Where, on average, typical men may be good at detail-oriented
processing, people with ASD may be incredibly good at perceiving detail...and impaired when it comes to seeing "the big picture."
Where typical men may be less able than women to make social judgments or empathize with others, people with ASDs are literally
disabled in these areas.

Baron-Cohen and colleagues have
come up with a model for this idea which divides the way the brain works into two major dimensions: systemizing and empathizing.

Systemizing is defined as "the
drive to analyze or construct systems" that "follow rules."13It also involves being able to predict the behavior of a system (as opposed to predicting or understanding
the behavior of other people). 11 Males are, on average, more skilled at "systemizing" than females are. Think of mathematicians
and engineers as good systemizers.

Empathizing is defined as "the
drive to identify another person's emotions and thoughts, and to respond to these with appropriate emotion." It also involves
being able to predict the behavior of people. Females are, on average, more skilled at "empathizing" than males are. Think
of therapists and teachers as good empathizers.

Please
note: The gender differences being discussed are "overall average" differences. In other words, it is understood that there
are individual men who are wonderful at empathizing and women who are fantastic at systemizing; there are intuitive male therapists
and brilliant female mathematicians.

The extreme male brain theory,
meanwhile, views people on the autism spectrum as hyper-systemizers: people who are extremely interested in and engaged with
rule-bound non-human systems, whatever their level of functioning. 14For someone
with less cognitive ability, "hyper-systemizing" might translate into collecting buttons, stones, or some other objects and
organizing them by type. For someone with a higher IQ, it might translate into a huge catalog of knowledge on a particular
subject, like insects, astronomy, or history -- a subject that is endlessly thought about, talked about, and expanded upon.
Routine would be one form of system, and disruptions to routine would be upsetting because they interfere with expectations
of a rule-bound system. Rigidity, not flexibility, would be the rule.

Empathizing, on the other hand,
would be impaired in individuals with ASD. Reading social cues, noticing what others are feeling (let alone figuring out how
to respond appropriately), and making sense of social hierarchies would be very challenging -- even more challenging than
it might be for the average male.

Fetal Testosterone: Support for
the Extreme Male Brain Theory?

What might explain this tendency
of people with ASD towards an extremely male style of thinking and coping with the world? Could factors that contribute to
human "maleness," especially if intensified, be somehow associated with the development of ASD?

Baron-Cohen and colleagues hypothesized
that high levels of fetal testosterone, a hormone that drives the development of male physical and cognitive characteristics,
were involved. 15 After all, the differentiation of male vs. female begins at conception and continues through prenatal development
and beyond. Could a high dose of fetal testosterone explain the "very male" cognitive and emotional profile of people with
ASD, as well as the fact that so many more males have ASD compared with females?

Some key studies have been carried
out to try to answer this question. In one, researchers found that girls who had been exposed to high levels of fetal testosterone
in the womb due to a genetic disorder had a more male-typical play style. 16In
another, using amniotic fluid that had been collected during pregnancy, researchers were able to demonstrate that the lower
the level of fetal testosterone in the womb, the higher a child's ability to empathize as measured by eye contact, quality
of peer relationships, and other factors 6 to 8 years later. 17

Finally, researchers explored
whether there was any association between high fetal testosterone levels during pregnancy and autistic traits in children.
Over 200 mothers who had had amniocentesis during pregnancy completed questionnaires about their child's behavior, including
social, language, and repetitive-behavior traits common to ASDs. The researchers found that the higher the level of fetal
testosterone during the pregnancy, the more likely the now 6-to-10-year-old child was to have some autistic characteristics.
15

Next Steps

The idea that people with ASD
have an "extreme male brain," and that high fetal testosterone levels can cause this, makes an intriguing theory. This theory
provides a framework for thinking about ASD in terms of "systemizing," which people with ASD excel at, and "empathizing,"
which they find challenging. It also provides an explanation for the fact that boys with ASD outnumber girls with ASD.

Still, so far researchers have
not been able to test this theory working with people who actually have a diagnosed ASD, only those who have ASD-like traits.
Baron-Cohen and his team are now following up with a new study which will test whether high levels of fetal testosterone are
associated with an actual diagnosis of ASD. 18Since ASD occurs only in about
1% of the population, the researchers will need a huge number of samples to test their idea, something they hope to achieve
by using the Danish Biobank – a massive storehouse of biological samples. 19

Researchers are also interested
in finding out if current levels of testosterone, as opposed to prenatal levels, play any role in ASDs. Is there some critical
window of time when testosterone levels matter, or do they always matter? If there is a window, when is it? 15

At the same time, interest in
oxytocin, another hormone, is growing. Some are theorizing that this hormone, which is associated with social memory and attachment,
maternal behavior, and human bonding, may be associated with ASDs somehow. 20There
have even been some preliminary studies which show that oxytocin nasal spray may improve social communication and interaction
in people with ASD. 21 22

There is reason to hope that
an understanding of how specific hormones contribute to ASD may lead, with additional research and testing, to promising new
treatments that address the core social deficits of ASD.

Related
Resources

* Find out what we're learning about the girls participating in the Interactive Autism Network: IAN Research Report
#12 - December 2009: Girls with ASD.

* Read A Girl's-Eye View: Detecting and Understanding Autism Spectrum Disorders in Females by researcher Shana Nichols,
author of the book Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-teen
and Teenage Years.

* For more on the extreme male brain theory, see the IAN page Cognitive Theories Explaining ASDs.

Skylar is a darling three year old,
conceived after eight infertile years, and absolutely adored by his parents. His mother experienced some problems during pregnancy,
but thankfully, her doctors pinpointed her low thyroid condition and were able to bring her fibromyalgia under control. Skylar's
birth, however, was no easier than the pregnancy: his breech presentation required careful maneuvering. That first year of
life presented its challenges, too: colic, reflux, and thrush. His constant screaming following his MMR vaccine was worrisome.
Then came the repeated ear infections.

Finally, after endless rounds of antibiotics
and several sets of ear tubes, Skylar seemed to thrive. He never crawled but walked so early that his parents were sure he
was smart. He began picking up words quickly. Lately, however, Skylar has not added any words to his vocabulary. Sometimes
he flaps his fingers in front of his eyes. Grandma noticed, when she visited over Thanksgiving, that he didn't always look
at her. His parents are concerned.

"YOUR CHILD IS AUTISTIC"

Some families can recall the date and
event when their toddlers went off-track, and even have home videos to document the change. For other families, like Skylar's,
it is a more gradual process. As their anxiety increased, Skylar's parents sought expert advice. The diagnosis: it could be
either pervasive developmental disorder (PDD) or autism.

"That is impossible," Skylar's parents
thought, going through the sequential steps of denial, anger, and bargaining. Maybe he was just having a bad day when he went
to see the specialist.

One reason that diagnosing autism is
so confusing is that there are no physiological indicators, as there are for diabetes or cancer. Doctors may not always find
the genetic markers they do with other disorders, because autism has many possible causes. It is only diagnosed when a child
exhibits certain behavioral and psychological symptoms.

Other symptoms, like Skylar's, are immunological,
dermatological, digestive, sensory, neurological, respiratory, cognitive, psychological, and developmental. If the symptoms
are mild, a child might be diagnosed with attention deficit disorder. Moderate symptoms might result in a diagnosis of Asperger's
syndrome. If severe, the diagnosis would be PDD or autism. These diagnoses make up what is known as the autism spectrum of
disorders. (See Box 1)

The autism spectrum includes many labels:
attention deficit disorder (ADD and ADHD), Angelman's, Asperger's, dyslexia, hyperlexia, Klinefelter's, Landau-Kleffner, obsessive
compulsive disorder (OCD), PDD, Rett's, Tourette's, and autism. Children on the autism spectrum have an important commonality:
a huge "total load."

Total load theory describes the cumulative
effect of the individual assaults of each problem on the body as a whole. (See Box 2)

The cluster of symptoms that eventually
leads to a diagnosis of autism arises when many systems of the body are stressed to their limits. Each child has a unique
personal load limit, as does a bridge. When that limit is exceeded, a very complex constellation of problems results. Of course,
not all children with these symptoms become autistic, but the more symptoms present, the more likely the child will be diagnosed
with one of the labels on the continuum.

WHAT CAN A FAMILY DO?

After anger, bargaining, and depression
subsided, Skylar's parents accepted his diagnosis. They then had to make some difficult choices. His doctors suggested traditional
treatments, including medications, behavioral management programs, and a special school that provides intense early intervention
in language, motor, and psychological areas. Undoubtedly, these treatments could help Skylar progress.

The problem with these usual interventions
is that they focus on ameliorating symptoms rather than addressing the underlying causes of autism. Medications can alleviate
behavioral and attentional symptoms, but often with undesirable side effects. Caring special education teachers offer individualized
programming which may fail to allow the child's own sensory systems to learn how to modulate and integrate information. The
lack of typical peers can also be problematic. Counseling programs help parents cope with issues such as picky eating and
sleep problems but, again, don't speak to their causes.

Fortunately, exciting new treatments
are currently receiving recognition. They focus on reversing problems related to reduced immune system dysfunction, overexposure
to antibiotics and toxins, birth trauma, and reactions to immunizations. And now the literature is reporting children who
are recovering from autism and PDD.

If you have a child with autism, like
Skylar's parents, consider trying the following alternative therapies.

Dietary Modification -- Although initially
challenging, efforts here alone can increase relatedness, attention, eye contact, and use of language -- immediately and markedly.
That is what happened with Skylar.

Feed your child a diet that is:

* unrefined, varied, and free of artificial
colors, flavors, additives, and naturally occurring salicylates (apple juice, because it contains salicylates, is to be avoided).

* gluten- and casein-free. If a child
is eating a diet consisting primarily of wheat and dairy products, probably one or both of these must also be removed. Wheat
gluten and casein from dairy products chemically form an opiate which puts some children into autistic-like states. Blood
tests are available to see if this is the case with an individual child. (See Resources)

* yeast- , mold- , and sugar-free.

All of these non-food items and problematic
foods increase the toxic load on bodily systems. In addition, the use of filtered water and natural household products is
recommended.

Nutritional Supplementation -- Nutritional
aids are essential to close the gap between what these youngsters eat and what their bodies need. Children like Skylar need
more nutrients than typical children because of poor absorption, self-restricted diets, impaired ability to detoxify environmental
chemicals and pollutants, and/or inherited nutrient deficiencies. Some supplements that have been found particularly helpful
are vitamins A, B-6, calcium, and magnesium. Others showing promise are:

* Essential fatty acids, taken as the
oils of evening primrose, cod-liver oil, or flaxseed;

* Amino acids, such as tryptophan, secretin,
and GABA, all necessary for complete digestion;

* Antifungals and probiotics, such as
Nystatin, Diflucan, and acidopholous, needed to reestablish intestinal integrity and to combat yeast overgrowth;

* Miscellaneous supplements, such as
digestive enzymes and herbs that can also increase digestive function.

Homeopathy -- Many modern healthcare
practitioners are using this 200-year-old approach to address health imbalances in children on the autism spectrum. Practitioners
use natural substances that have the ability to cause symptoms in a healthy person, but cure the same symptoms in a sick person,
by stimulating the body's own ability to heal itself. With this method, like cures like, whereas in traditional medicine,
the opposite approach is used.

Immunotherapy -- Vaccine-induced autism
is a tragic outcome of today's modern medicine. While the world has been saved from epidemics of dread diseases, some of today's
children are being sacrificed. The discovery of measles virus in the ulcerated guts of children with autism has led to a variety
of treatments that release children from the ravages of continuously high titers even years after the initial vaccine. For
additional information on this treatment, contact the National Vaccine Information Center (NVIC). (See Resources)

Treatments That Affect Sensory Processing
-- Children with autism process what they touch, smell, taste, hear, or see inefficiently. The sense of balance, located in
the inner ear, may also be disturbed, due to the repeated ear infections many of these children experienced as babies. The
balance system is essential to efficient processing of sound and movement, as well as vision and language. Remediation of
impaired sensory processing is essential to lessen autistic symptoms. (See Resources for trained specialists in each area.)

* Sensory Integration Therapy, provided
by specially trained occupational or physical therapists, enhances the child's ability to respond appropriately to all types
of sensory input. Therapy consists of guided activities that challenge the body to make efficient, organized responses. A
child is then able to pay attention, relate, sit still, organize language, and focus better.

* Auditory Integration Training (AIT)
normalizes the way children with autism process sound. Some children are oversensitive, while others are undersensitive. The
distorted messages sent to the brain impair the ability to focus on and give meaning to what is heard. Several types of AIT
are available from specially trained practitioners. All utilize electronic equipment, headphones, and filtered music. This
intervention stimulates the balance, movement, and auditory systems, as well as eye movements and digestion.

* Vision Therapy (VT) normalizes the
way children with autism focus on and give meaning to what they see. Vision is not the same as eyesight.

It is a set of abilities, learned from
birth, and acquired in tandem with movement. Having both eyes move together, align, fixate, and focus as a team enhances the
ability to interpret and understand visual information. Skylar is one of 30 percent of children with autism whose eyes do
not work together. Once this problem was remedied, his relatedness improved.

Many symptoms of autism have visual
components. Visual dysfunction may result in poor eye contact and attention. A lack of binocularity could result in other
autistic symptoms. Specially trained optometrists can prescribe a program of movement activities and use lenses and prisms
to teach the eyes how to work more efficiently. Vision Therapy activities must be individualized for each child.

* Educational Kinesiology (E-K), also
known as Brain Gym, enhances sensory function by using specially designed movement activities. (See For More Information)

* The Son-Rise Program is an intensive
therapy based on a family's loving, trusting, respectful attitude. It encourages parents to follow a child's actions, while
simultaneously directing him into an expanded world. (See Box 3)

Denial and depression have turned to
hope for children diagnosed with autism or PDD. Parents are empowering each other to search for and discover remedies never
before considered. Regional and national conferences abound with a focus on causes, not symptoms. Internet chat rooms and
listservs allow the instant exchange of information and news of promising treatments.

Recovery from autism and PDD is now
a possibility. Skylar will probably attend a regular preschool, not one for children with special needs. As his health improves,
cognitive and social-emotional function will, too. His parents may have to change their diets and shop differently. Their
lives will be full of therapy appointments and consultations with educational and health specialists. But what could be more
satisfying than saving their child?

The Option Institute's Son-Rise Program
teaches both parents and professionals how to design and implement parent-directed, child-centered, home-based programs for
their children with autism. Son-Rise emphasizes the importance of creating a relationship with the child as a basis for teaching
skills. A unique aspect of Son-Rise is the focus placed on attitude -- a nonjudgmental and loving attitude is the foundation
of the program and considered essential to facilitate the child's development.

The Options Institute was founded by
Barry Neil Kaufman and Samharia Lyte Kaufman, who have spent over 25 years "rebirthing" their son Raun from supposedly "incurable"
autism. At 18 months, Raun was mute, totally withdrawn from human contact, self-stimulating, and tested below 30 on the IQ
scale. Barry Neil and Samharia worked with their son 12 hours a day, seven days a week, for over three years. At the end of
that time, Raun was not only cured of autism, but he had evolved into a highly verbal, extroverted, loving, and brilliant
young boy who demonstrated a near-genius IQ and bore no traces of his earlier condition. Raun recently graduated from an Ivy
League university with a degree in biomedical ethics, and is now a teacher and spokesperson for the Options Institute.

The Kaufmans wanted to help other families
help their children, and so in 1983 they founded the Options Institute, which offers in-depth programs for families. In addition
to an intensive, one-week program, advanced training programs, and start-up programs, Son-Rise conducts other support services
for families who have attended one of their programs. The Son-Rise Program has been disseminated throughout the US and across
the world.

Barry Neil Kaufman is the author of
nine books, including Son-Rise and Son-Rise: The Miracle Continues. Deepak Chopra has said the Kaufmans' work is "the science
of love, compassion, and insight which will transform the world." Coretta Scott King says their work "affirms the unlimited
potential of the human spirit." For more information about the Son-Rise Program, contact the Options Institute at 2080 S.
Undermountain Road, Sheffield, MA 01257; 413-229-2100; or visit their website at www.option.org or e-mail them at sonrise@option.org.

Note: This article was written
when this web site was entitled "Aspie Advocacy." When I realized that I am more properly HFA (high-functioning autistic)
than aspie, despite my many similarities to aspies, I decided that a bifurcated view of AS and autism did not make sense.
Thus, I changed the name of the site, as well as the editorial "slant," to reflect the unified nature of the spectrum as a
whole. That is why I recently changed the title in the link to this article. However, for the moment, I am leaving
the article as it was written originally. Keep in mind that when I say "aspie" in this article, I refer to all people
on the higher-functioning end of the spectrum, regardless of which diagnosis they may have.

Before I begin, let me give you a little bit of background so you know exactly what my
"qualifications" are (and are not). My name is Frank, and I am a thirty-year old aspie male. I do not have kids,
and at this time I do not plan to have any. Despite my non-parent status, though, I think I have some insight to offer
to parents of AS children. In the year or so that I have known of AS, I have learned quite a bit on that topic, and
I have had the privilege of communicating with many other aspies online. Some of them are living relatively normal lives,
with a spouse and kids, and some are living on SSI or other forms of welfare, unable (or convinced thy are unable) to work.
I fall somewhere in the middle... I am employed, but as someone that probably would qualify for Mensa, I am very much underemployed.
The job I do is a relatively low-stress, low-responsibility job that I can do half-asleep, and that is the reason I am able
to deal with the strain.

Like most (if not nearly all) aspies my age, I was never diagnosed as being on the autistic
spectrum as a child. Until very recently, everyone thought that autistics were uncommunicative, mentally retarded lost
souls that just sat and rocked all day. That's the stereotype for low-functioning autistics, which are the most common
of the classic Kanner-type autistics. Certainly no one would diagnose a bright, talkative child as being autistic...
and the more specific diagnosis of Asperger's Syndrome did not gain notoriety in the western world until around 1990.
AS was not included in the DSM (psychiatrist's diagnostic manual) until 1994. Thus, aspies like me grew up with no special
consideration at all, and with no AS-related treatment or counseling.

I always knew I was different, since about the third grade. Starting in the seventh
grade, I began to be the target for more adolescent abuse than most people would ever care to imagine. I never knew
why I was always singled-out as a target... I really tried to be nice to everyone, and it just did not work. That ostracism
tore apart my self-esteem, and by the time I graduated from high school, I had adopted the idea that I was a worthless piece
of refuse. Those years are such a bad time to have this sort of thing happen... it is right at that time when kids are
trying to fit in and find their place in the group. Well, it is not surprising that I suffered through the better part
of a decade in a deep depression. Although I still struggle with issues of self-confidence and motivation (I still have
no ambition at all), the depression is finally under control (at least as far as the dysphoria is concerned) due to the wonders
of modern pharmaceuticals. It is this experience that has allowed me to see something that is really quite obvious,
but somehow rarely mentioned: Depression is THE primary disability for aspies.

There are a lot of aspies that say they cannot work, and I don't doubt that to be true.
Every single one of them I have spoken to (well, typed to) has also been very depressed. Depression is a very real,
very powerful disability that can and does make it impossible for so-affected individuals to function in any meaningful manner.
It's too easy to blame the AS itself and to overlook the role of the depression in making daily life impossible. The
AS causes ostracism, which causes a loss of self-esteem, which causes depression, which causes disability. Cut off the
depression and the disability goes away too. It's hard, but it has to be done. And if my own experience is any
indication, the recovering depressive will find that he is more resistant to the kind of abuse that caused the depression
in the first place. You really do come out of it stronger. Even so, it is an uphill struggle, and the after-effects
can last a long time... maybe a lifetime. It's a much better idea to prevent it in the first place.

Now I am not going to try to tell anyone that it will be easy for a non-depressed aspie
in the work world. It won't be. Every office has the whole office-politics thing, and aspies by nature do not
play that game. We always end up being the losers in social-positioning games. Further, we don't relate to others
the way that we are expected. There's such a big emphasis on the "team player" stuff, and we can never measure up to
NTs in that regard. I will admit that it is harder for us, and that there are less options. We will, by and large,
be at low levels for the duration of employment at any given site. This is NOT because we are disabled, impaired, or
in any way incapable. It's because it is an NT world, and they make the rules to suit themselves, and almost no one
is going to give us a break because we are different. On the other hand, we are natural innovators, and we make great
entrepreneurs. We have to be realistic in our expectations of what we will and will not be able to do.

Now, let me dig into the causes of depression for aspies. Well, obviously, anything
that causes a normal kid to become depressed can do the same to an aspie kid. That does not explain, though, the near
100% incidence of depression in aspies. In a nutshell, aspies are depressed because they believe that they are defective
people... unwanted misfits that people wish would go away. This certainly was the case for me! There are only
so many times you can be told that you are worthless garbage before you begin to believe it. After all, could all of
those people be wrong? (Answer: YES!)

From what I understand, my own experience is absolutely typical of aspie boys in regular
schools. It starts in the seventh grade, because that is the first year that the structure and control of the "one teacher
all day" class environment is dumped in favor of the "change classes every 45 minutes" pattern of middle/jr. high and high
school. There are literally hundreds of opportunities for mean kids to attack their classmates in a single school day,
and they get away with it 99% of the time. I wish I could suggest an easy way to end the abuse, but I don't know that
there is one. The school officials will NOT want to help you... oh, sure, they'll give lip service... "We don't tolerate
abuse at all..." but when the rubber hits the road, it is all talk. Encouraging your unpopular child to report abuse
to school authorities is a bad idea, because the bullies just hate the "rat" that much more, and the abuse gets worse.
Trust me; I've been there.

The only thing I can offer is to teach the kid to defend himself, and to ignore the rules
against self-defense. In my school, the bully and the victim were both punished equally if the victim tried to defend
himself. I knew this, and I followed the rules. I just stood there and took my beatings as the school officials
pretended they did not notice ("Boys will be boys," they say... "They have to learn to settle their own differences."
That's what they are thinking as they stand there and let bullies ruin your aspie kid's life.) I am truly sorry that
I have nothing better to offer than that, but a mainstream school is just going to remain a hostile environment for autistic
kids of any flavor. It's worse if your child is small or uncoordinated, which make effective self-defense harder, if
not impossible. Home-schooling is a good idea, if you're up to the challenge.

Bullies are not the only source of depression for aspies. Unfortunately, the other
is much more insidious, and the damage may be more pervasive. It's the psychiatrist that you think is helping your kid!
Most of the psychiatric industry operates from an assumption that normal is good and everything else is bad, and that everything
else should be eliminated. They use words like "dysfunction" and "impairment" to talk about your child's aspie traits.
Rarely do they focus on the good points... and there are a lot of reasons to be happy you have AS. You would never know
that from the way that most shrinks talk, though. I am not saying that all of them are bad, but you have to be aware
that the likelihood is high that the doctor can make things worse as he tries to help.

AS and other forms of autism cannot be cured, and even if they could, the person being
"fixed" would be gone. There is no normal person inside the aspie, waiting to be set free. The aspie characteristics
go all the way to the core. It can't be stripped away. What good does it do to have a doctor make your child hate
his autistic condition when there is nothing that can be done about it? This certainly is not the intent of the medical
community, but it happens anyway, and with alarming frequency. When a person hates the fact that he is autistic, he
hates what he is and who he is. That's not a recipe for a good life! There is so much that is good about AS, but
so many people just refuse to see that. If your child's therapist or psychiatrist is one of them, find another.

There are some treatments designed to help aspie kids fit in, and I do not hold a high
opinion of them. They basically teach the kids to suppress their natural selves, and to act like the NT that everyone
wishes that they were. I've talked to a number of aspies that live behind such a facade, and they tell me that it is
very stressful and demeaning. Nothing like having to hide who you really are all day, every day, right? Anyone
want to guess whether these kids start to think that their natural autistic state is bad and shameful? These are not
going to be happy kids. They'll be self-conscious, living behind a lie, afraid to show who they really are. It's
a bad deal.

Now do not get me wrong... I am not against teaching aspies and auties some simple "tools"
to deal with living in an NT world, but it MUST be made clear that these are just tools to deal with having to live in a hostile
world in which aspies are seriously outnumbered, and NEVER should the child be allowed to get the idea that being himself
is bad, shameful, or unacceptable. We (aspies) are different, NOT bad, NOT inferior, NOT broken. That message
has to be repeated... make sure it gets through. Treat AS as a gift, not a disability. If you don't know what
the good points of AS are, please have a look at some of my other articles. If your child is seeing a psychiatrist,
be sure that the doctor only intends to help the child deal with living in a world that is not his own, and not to try to
"fix" the child in any way. Being a "fish out of water" is hard enough! Please humor me even if you yourself wish
your child could be "fixed" and made normal... it is not going to happen, and if you try, you will make things worse.
People can and do live happily with AS, but no one lives happily with a sense of self-loathing.

That brings me to some suggestions as to what you should, and should not, do. Don't
try to suppress your child's autistic behavior... things like like pacing, flapping hands, rocking, obsessing on one thing,
et cetera. In a calm, rational, logical manner, you can explain why the child should curb such behaviors when in public
places, but don't punish the child if he slips and does something embarrassing. He really is not trying to embarrass
you! He is far too wrapped up in his own needs to even consider that you have feelings too. Do allow your child
to have "alone" time each day, if he so desires, and do allow him to stim when he needs to. These are natural, real
needs for autistic people, and stifling them will make your child seek more extreme ways to release stress.

Aspie kids, by the way, respond best if you tell them exactly why they must, or must
not, do certain things. Be specific with your reasons, and make them as concrete as possible. The perennial favorite
"Why? Because I said so" is not likely to work. That may work on NT kids (although not always that well) that understand
social hierarchies, but aspie kids are more logical, and do not respond as well to pure domination. Yelling is even
less likely to work... it is likely to put the kid in overload, or even cause a meltdown. Calm and rational is the order
of the day. Very often, you will find that your child's "rebellious" or "bad" behavior is not motivated by any sort
of malice at all! It might just be the autistic child's natural way. Remember, your ways are just as bizarre and
unusual to him as his are to you... but he does not have the benefit of your years of life experience.

In short, and I repeat this point to emphasize its importance, you really need to be
careful that the aspie kid is never given the impression that there is anything wrong with having AS. Not from his peers,
not from his doctors, not from you or other relatives. Jealously guard the notion that AS is a good thing, and that
most people just do not understand. If the child can grow up with self-image intact, he will be much better able to
deal with the stresses of real life. Yes, it is true, the kid does need to learn how to deal with the world at some
point, but that time is not until the mid-20s at the earliest, IMO, for an aspie. No 18-year old is really mature enough
to deal with life, but an aspie does not usually reach a similar level of maturity until about 25.

I cannot overstress how easy it is for an aspie kid to lose self-esteem and get depressed.
It is much easier for aspies to get depressed than NTs, and look how many depressed NT kids there are. That depression
is the cause of most of the inability to deal with life that so many aspies display. And it sure makes more sense to
prevent the depression than to try to cure it later! It's a very real concern, and it is almost universal among aspies.

* * * * * ** * * * * **
* * * * ** * * * * ** * * * * **
* * *

HOLIDAY LETTER TO RELATIVES TO PROVIDE INFORMATION ABOUT YOUR CHILD
AND AUTISM

This was written for the purpose of it being sent to relatives,
friends, and hosts of holiday gatherings that might need a crash course in what to expect from their guest with autism. This
letter is written as if the autistic individual person is writing it personally. ~ Author, Viki Gayhardt

Dear Family and Friends:

I understand that we will be visiting each other for the holidays
this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more
successful.

As you probably know, a hidden disability called autism, or what
some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder,
which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see, but which
make it difficult for me to adapt to my surroundings.

Thanksgiving & Christmas is one of the roughest holidays for
me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that
with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort.
If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown
out background noise and ease my discomfort.

Sometimes I may seem rude and abrupt, but it is only that because
I have to try so hard to understand people and at the same time, make myself understood. People with autism have different
abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be
autistic), or may have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful
and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving
freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is
why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something,
anything, changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can't understand what you say
because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time.
You might think I am ignoring you - I am not. Rather, I am hearing everything and not knowing what is most important to respond
to.Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of
my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful.
I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where
I could retreat.

If I cannot sit at the meal table, do not think I am misbehaving
or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel
so antsy and overwhelmed by all the smells, sounds, and people--I just have to get up and move about. Please don't hold up
your meal for me--go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism
is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating. Sight,
smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of
people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or
oral motor coordination is impaired. Don't be disappointed if Mom hasn't dressed me in starch and bows. It's because she knows
how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable.
When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling, because that is
how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar
with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things--just please
be patient with me, and understanding of how I have to cope.

Mom and Dad have no control over how my autism makes me feel inside.
People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "self
regulation," or "stimming'. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be
disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world.

Sometimes I cannot stop myself from talking, singing, or doing
an activity I enjoy. The grown-ups call this "perseverating" which is kind-a-like self- regulation or stimming. I do this
only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a
certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me "stim" for
a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than
the average child. This is for my own safety, and preservation of your possessions. It hurts my parents' feelings to be criticized
for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment
intended for saints. My parents are good people and need your support.

Holidays are filled with sights, sounds, and smells. The
average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it's very hard
work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that
I don't possess the neurological system that is required to follow some social rules. I am a unique person--an interesting
person. I will find my place at this celebration that is comfortable for us all, as long as you'll try to view the world through
my eyes!

********************************************************

The World I Want
To Live In by Amanda Baggs, Autistic

This is a terrifying world to live in, if you,
like me, are autistic right now.

So-called autism experts write papers about
us, detailing all of the dysfunctions and deficits we are supposed to have. Doctors recommend that we be medicated, confined,
or subjected to behavior modification therapy, all with the goal of making us less expensive, more managable, and less autistic-looking.
Genetic research is carried out to see if we can be eliminated or prevented.

Parents write messages on the Internet saying
they wish they had a normal child -- one who speaks more "normally", or has more "normal" social relations, or who doesn't
do such "odd" things as flapping hands, rocking, or lining up toys.

We are portrayed as something disordered that
needs fixing, some tragedy that deserves mourning, some sort of monsters who came into our parents' lives and ruined them.
We are portrayed as lacking such "human" qualities as empathy, compassion, and love. We are portrayed as dysfunctional, impaired,
and damaged. People spend vast amounts of money to try to remove harmless traits that are common and normal, if you happen
to be autistic.

The depth of pain that this causes an autistic
reader is inexpressible. It is a deep denial of who we are, and a rejection by the same people who say they love us and want
to help us. It effectively tells us, "You do not deserve to exist. Your existence causes pain. You should be someone different."

Parents are portrayed as some sort of heroes
for dealing with us, and we are not portrayed as any sort of heroes unless we emulate normality, and confirm the current theories
about autism. At that point, we are paraded around as having "recovered" from autism. I think it is heroic for an autistic
to survive into adulthood, subjected to daily bombardment from an incomprehensible world that does not accept autistics. It
is heroic for an autistic to exist in this world at all.

This is a world where autism is considered
a disorder, and autistics are expected to submit to being "repaired". This is a world where autistics are subjected to abuse,
ridicule, and punishment for being who we are. This is a world where autistics are given dangerous psychiatric drugs, and
treatments which attempt to force neurotypical behavior on autistics. This is a world where autistics who manage to mimic
neurotypical behavior enough to "get by in the world" are often plagued by deep emotional and self-image problems because
of the discrepancy between who they are and what they appear to be. This is a world where autistics are considered, and treated,
as something less than human, and are denied our basic human rights. This is a world where autistics are punished every day
for being real, and rewarded for being false. This is not the world I want to live in.

I want to live in a world where it is okay,
even admirable, to be autistic. I want to live in a world where autism is known to be the unique and beautiful thing that
it is. I want to live in a world where I can be sure that autistics will be loved and respected as who we are, not drugged
or forced to behave as something we are not. I want to live in a world where I can say "I am autistic" and not be expected
to be a bundle of abnormalities and deficits. I want the word "Autism" to provoke not a mental defective or something that
needs "fixing", but an image of a wonderful and unique person with a wonderful and unique way of being and experiencing the
world. I want to live in a world where autistics are celebrated, not degraded.

I want to stop being afraid for all of the
autistics who have brain damage or impaired cognitive functioning because of medications that they should have never been
given in the first place. I want to stop being afraid for all of the autistics who are told effectively, "Who you are does
not exist" or "Who you are is not good enough", and forced to emulate neurotypical behavior "to get on in the world". I want
to stop being afraid for all of the autistics who are forced to live in institutions or on the streets because of an inability
to "get on in the world". I want to stop being afraid for all of the autistics who are arrested for "bizarre" or "suspicious"
behavior, or for failure to communicate. I want to stop being afraid for all of the autistics who are abused, taken advantage
of, and discriminated against, for being autistic, and who are denied the help they need to survive. I want to stop being
afraid that these things will happen to me, especially because most of them already have.

I want autistics to be told, "It is good to
be autistic." I want the choices, boundaries, brains, and emotions of autistics to be respected. I want parents, upon finding
out their child is autistic, to be as joyful as I would be to have another autistic in the world. I want to see parents and
teachers learning the delight and beauty of autism. I want doctors and scientists to stop theorizing about what is wrong with
autistics, and start theorizing about what is so right with autistics that there is this whole other kind of unique person
in the world. I want those autistics who are incapable of working to still be able to live a dignified life the way they want
to live it. I want autistics to have access to the help they may need to communicate, to understand things, and to live in
the world. I want autistics to always have access to the information that they are not the only one like them in the world.
I want autistics to be raised to be proud and confident that who they are is unique and beautiful.

That is the world I want to live in. I know
that it is possible. I also know that that is not the world I live in now.

Currently, I can find exactly one printed book
which tells me what I know to be true -- it is okay, even beautiful, to be autistic. The book is Through the Eyes of Aliens,
by Jasmine Lee O'Neill. I carry a copy of this book everywhere, and even sleep with a copy of it. It is the only concrete
and lasting object I own that tells me, directly, "It is okay to be you." Someday, I hope there will be more.

High-functioning autism. People with this disorder don't get the joke,or most other interpersonal cues that society takes for granted. They havedifficulty with communication and social skills, and can become
preoccupiedwith one narrow
subject. But they are typically bright and often excel inmath, science and high-tech. Unrecognized and untreated until recently, thedisorder is now the focus of research, classes and hope.

Ashton Smith knew he didn't fit in.The 16-year-old Mountlake Terrace boy couldn't make friends. Thejokes, camaraderie and easy conversation typical of teenagers were beyondhis grasp. The social cues that guide most people through the
world were asimpenetrable to
him as a concrete wall.

The problems are typical for people like Smith, who suffer fromAsperger syndrome, a neurological malady that dooms many of its victims to a lonely
life and dead-end jobs despite higher-than-average intelligence.

In Smith's case, the condition, a form of autism, may have been afactor in his death earlier this month.

More than five weeks after his mother reported him missing, the boy'sbody was discovered in the woods near their apartment. He was shot once in the head
by a handgun that lay at his side. Thoughpolice haven't determined whether the death was suicide or homicide, Smith's parents said he had been depressed
and had tried to kill himself oncebefore.

"I hope this will bring to light how isolated these kids are and howmisunderstood," said Helen Powell, who runs the Asperger Support Network in Seattle.
"Their world can look pretty bleak."

Threats of suicide are very common, even among youngsters, saidPowell, whose 17-year-old son has Asperger syndrome. "I've heard it from 4- and 5-year-olds."

Until nine years ago, the disorder went unrecognized, and kids who hadit were simply labeled "weird."

"When the diagnosis became official in 1994, schools finally had aplace to put that 'weird' kid they'd been diagnosing with ADD(attention-deficit disorder) or whatever," said Mary Meyer, whose
daughterhas Asperger and
who heads the adult chapter of the Asperger SyndromeEducation Network in Northern New Jersey, where she lives.

An estimated one out of every 1,000 people suffers from the syndrome,named for the Austrian pediatrician who first described it in 1944. Muchprogress has been made in identifying children with the disorder,
but thereremain thousands
of adults who were never correctly diagnosed.

Meyer's 28-year-old daughter, Susan, saw psychiatrists from the age of5 but was only given a name for her problem when she was in college. By that time,
the young woman was seriously depressed.

Every week now, Susan Meyer attends a social-skills group at WestBergen Mental Healthcare in Ridgewood, N.J.

Karen Roe started the Seattle Asperger Syndrome Education and Support Group five years ago after struggling with the
condition herself andwatching
her son, now 11, face the same social awkwardness that set herapart from others.

"I always felt like I didn't belong on the same planet," she said.

Roe, who became a counselor specializing in Asperger, offers anintensive training program called "The Gift of Gab" to help teens and adultslearn how to converse more easily and read other people's body
language and moods.

People with Asperger are often particularly competent in high-techfields. In 2001, Wired magazine ran an article suggesting that the couplingsof technologically brilliant but socially inept people may be
to blame forhuge increases in
the number of children with Asperger syndrome and autismin areas such as California's
Silicon Valley.

Roe says her training program is particularly useful for people whohold jobs at Boeing, Microsoft and other Northwest technology companies.

"They can often get the job," she said, "but it's hard for them tohold it because of their difficulty with communication and social skills."

Movies with no sound Dr. Jeanne Marron, clinical director for Aspergerservices at West Bergen, said the above-average intelligence of most of herclients makes it possible to teach them how to read and react
to socialcues, an instinctive
skill they lack.

For example, she shows them movies with the sound turned down, guidingthem
to examine the changes in people's expressions during emotional scenes. "One study showed that people in the (Asperger) spectrum only focused on themouth, whereas most people scan the eyes and the entire face," Marron said."We get them to do this."

Susan Meyer said this training has helped her "become better atdealing with people who are angry or have different opinions than I do."

Researchers at the University of Washington's Autism Center areinvestigating whether it's possible to "switch on" brain regions involved inrecognizing faces and reading expressions, which generally show
very littleactivity in people
with Asperger. In the project, which is just gettingstarted, children are repeatedly shown photographs and coached on what tolook for, said center director Geraldine Dawson, co-author of
"A Parent'sGuide to Asperger
Syndrome and High-Functioning Autism." Later, their brainswill be scanned again to see if activity levels have increased.

Thus far, genetic research has revealed no medical answer to thedisorder, although MRI scans show significant differences in nerve-cellconnections in the brains of people with Asperger syndrome.

In the meantime, "education and support are the interventions ofchoice," said Peter Gerhardt, executive director of Nassau/Suffolk Servicesfor Autism in New Jersey. "With adults, it runs the gamut from
how to get ajob to how to avoid
being a victim of sexual abuse."

Without an ability to understand subtleties in conversation and bodylanguage, it's easy to get taken advantage of, emotionally and physically.

Gerhardt was formerly at Rutgers' Douglass College, where he formed asocial-skills group that Susan Meyer attended. He dubbed the group "AspiesWith an Attitude."

Bestowing this nickname, said Mary Meyer, "was an incredibly importantway to help them form an identity, a sense of belonging and self-esteem -even though it's a strange kind of belonging."

Gerhardt said his mission is to raise awareness about his patients. "Ipresent their stories at autism conferences, to get the message out aboutwho they are, and that they are interesting and should be valued,"
he said.

Dawson, who directs the UW's center, said she also emphasizes thepositive qualities of Asperger syndrome in her book. Many "Aspies" possessan amazing capacity for visualization that makes them well-suited
toengineering, architecture and art. And their ability to memorize
staggeringamounts of information
is a skill many envy.

"Instead of just focusing on the
challenges, we're just as interestedin
the unique traits and capabilities," Dawson said.

A virtual birthday party An online program called KidTalk developed bythe University of Washington and Microsoft aims to relieve the isolation ofyoungsters with Asperger by offering a nonthreatening environment
where theycan converse by
computer. The program presents social situations, such as abirthday party, then
guides kids through the intricacies of the socialinteractions through a chat-room format. A trained therapist "listens in,"offering private tips and comments to help children interact more
smoothly.

"It can be easier for kids with Asperger to have more intimate anddeep relationships by computer, when they're not overwhelmed by face-to-faceinteraction," Dawson said.

Two other vast challenges remain for adult Aspies: employment andhousing.

"James," 46, lives with his widowed father and cannot hold a jobdespite his genius IQ. He spends his days in front of the TV and thecomputer, reading Old English literature and leaving the house
only formartial-arts classes.
His father, "Dave," worries that when he dies, Jameswill have nowhere to go and no means of support.

"He can take care of himself, and he can drive, but he doesn't haveeconomic self-sufficiency and can't plan ahead," Dave said.

With Marron's help, James has been learning how to prepare for jobinterviews. Some Aspies also need her help making sure they have a workingatmosphere free of loud noises or flashing lights. "I think for ourhigher-functioning people, there is hope of getting a meaningful
job,"Marron said.

Susan Meyer longed to become a teacher, but she fears that's notpossible. Instead, after several unfulfilling part-time jobs, this collegegraduate is looking into training as a locksmith.

Marron said the health-care center is seeking funding for a

residential program
where staff members would check in regularly, monitoringthe budgeting and housekeeping
tasks that often prove difficult for people with Asperger.

"My long-range goal is to help every one of these Aspies have asproductive a life as possible," said Mary Meyer. "So many of them could makesuch a wonderful contribution to society."

This story was written by Abigail Leichman of The Record (BergenCounty, N.J.) with Washington state information contributed by Seattle Timesstaff reporter Sandi Doughton.

Characteristics
of Asperger syndrome

. Extreme inability to interpret social cues.

. Difficulty understanding other people's feelings.

. Difficulty judging personal space; motor clumsiness.

. Marked impairment in the use of multiple nonverbal behaviors such aseye gaze, facial expression, body posture and gestures to regulate socialinteraction.

University of Washington
and Microsoft for youngsters with Asperger isavailable at the UW address above.

The Web site Asperger Northwest lists support groups and programs:aspergersnw.tripod.com

The Seattle Asperger Syndrome Education and Support Group meetsmonthly. For more information or details on "Gift of Gab" classes to helpteens and adults learn to converse, read moods and body language,
contactKaren Roe, 206-782-2232
or fishmama@qwest.net

The
Seattle Asperger Parent Support Group holds meetings andpublishes a newsletter. Contact the group at: seattleaspergers@yahoo.com.

Information
about a national organization, the Asperger SyndromeCoalition of the United States, can be found at: www.asperger.org

"Finding Ben: A Mother's Journey Through the Maze of Asperger" byBarbara LaSalle (McGraw-Hill)

* * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Residential Living for the Person with ASD

How to find the best living situation for a young disabled adult

Choosing the right residential
situation for a young adult with autism can be one of the hardest decisions a family has to face. It is challenge to wade
through the myriad of options available even the most experienced of parents and caregivers.

Karin Novak of Dungarvin, Inc., is on staff with a national organization
that provides residential and employment services to persons with disabilities. Their organization states a family's first
step when considering placing a relative in a residence should be to contact and work with their county representative, case
manager or social worker. This person can advise them on the range of funding options available and other important considerations.

Another valuable resource is ArcLink, a nonprofit advocacy organization
with a national database which lists providers of home and community services for the disabled. Their Web site provides guidance
for families on understanding federal rules and regulations, help with identifying the right services, a way to search for
providers, and an opportunity to exchange information and network with others.

Novak, who is senior director of Dungarvin, Inc. in Minnesota, suggests
that when families have made the decision to begin looking for an appropriate residence, they should consider the following
questions:

What is the company's mission or philosophy and does it fit with
the needs of the prospective resident?

Is the location convenient to the potential resident's workplace
and for visitors?

Is there a list of people who can provide references? Has a "satisfaction
survey" been administered and are those results available? (Most organizations gather survey information from the people served,
their families and county case managers, and in some cases, employees.)

Are staff members professional? How often does the staff turn over;
what is the average length of stay for both staff and residents?

How complex are the needs of the individual? Are they medically fragile,
and will the organization be able to meet their needs over time?

Is the organization stable: Are there sufficient financial resources?

"I asked to speak to the president of the company," says Fran Yoch, a parent who was searching for a place for her daughter.
"We wanted to know that it was run in a way that would be the best for the residents." Yoch added that it was also helpful
to look at annual reports, mission statements and even strategic plans. "You want to know that the structure is strong, that
even though there may be staff turn-over, the organization will still run well."

"Our organization is guided by our mission statement, 'Respecting
and responding to the choices of people with developmental disabilities,'" says Tim Madden, President and CEO of Dungarvin,
Inc.

Once family members have narrowed their possibilities to a short
list, Novak suggests some important additional considerations:

Chemistry among the individuals living in the house: "Age is not
as important as whether personalities are going to mesh," explains Novak.

What sort of commitment will be expected from the family? "Families
should decide how they want to be involved, and choose an organization that has the flexibility to meet that level of involvement,"
says Novak. A company should be able to honestly tell family members what will work with their philosophy, whether they want
to be involved on a day to day basis, or just contacted for major decisions.

There should be a team approach by staff members. According to Novak,
a good organization should have an adequate pool of resources. "There should be a team process, staff members should be thinking
about other community resources they can bring in to serve an individual, whether it is family members, county staff or other
professionals."

What is the living situation going to be?

How many people will be living in the house and will residents be
expected to share rooms?

Is the organization planning for the future?

Are they committed to serving individuals as they age?

Typical residential services are not the only option. Also available
are programs in which a staff person comes to the family home to assist with caring for an individual. Another option called
Consumer Directed Community Support, which is administered by the local county, allows a family to hire their own staff.

The more research families do the greater chance they will have
of finding a situation that will meet all of their needs now and in the future. Knowing what to look for, and what kinds of
questions to ask, can help to make the process of selecting an organization and services more manageable, and ensure that
the final decision will be the best one.* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Autism & Airport Travel Safety Tips

Port
St. Lucie, Florida

By
Dennis Debbaudt

Traveling
through airport security will never be the same. Every traveler passing through a security checkpoint will now encounter waiting
in long lines, having to produce two forms of picture identification at multiple locations, mandatory questioning and inspections
of personal belongings bystrangers and the increasing likelihood of a
light touch by stranger holding a geiger counter-like sound producing wand. When you add to the mix the possibility of a complete
physical frisk or pat down and the presence and scrutiny of armed, uniformed paramilitary personnel the accompanying sensory-enhancing
gauntlet of sounds lights and touch can tax the system of any traveler let alone one who has autism. This experience has quickly
become standard operating procedure at U.S.airports.

People
with autism, parents and caregivers may want to consider taking some extra measures to make passing through a security checkpoint
easier.

As
daunting as a security checkpoint is for some children and adults with autism, we must consider the point-of-view of the security
professional. The behavior or characteristics of the child or adult with autism may make the security professional extremely
anxious. Consider the reliance on visual cues and innocent echolalia a person with autism may display, such as repeating a
phrase observed on a close-by poster. At a security checkpoint that phrase might include words that cite the laws or warn
against the use of the words "bomb threat" or "hijacking." Someone who repeats this phrase would quickly come under suspicion
at a security checkpoint. Those that repeat a question, run from or blanche at passing through a metal detector, or become
over-anxious at attempts to touch them would also merit extra scrutiny. Left unexplained, the behaviors and characteristics
of some person's with autism may delay their trip and cause unnecessary anxiety. These encounters are the types of situations
that can easily escalate into misinterpretations, verbal and physical confrontations, physical containment and restraint.

As
reported in my latest book, Autism, Advocates and Law Enforcement Professionals (http://www.jkp.com):

"Those
with autism, parents and caregivers may want to consider carrying autism handout information which would at least include
a basic autism brochure, and a person-specific handout that at least includes their picture, description, information about
behaviors that security may find suspicious and the best way a security professional can communicate with or interact with
that person. Many parents find business card handouts that might contain a message such as 'Perhaps my son/daughter's behavior
is surprising to you. This is because he/she has autism', a brief definition of autism, and the phone number/website address
of a local or national advocacy organization."

These
are grass roots, one-on-one autism awareness campaigns. Make sure to carry enough generic information to leave behind with
the securityprofessionals you may encounter. Anyone reading this message can
download theinformational handout "Educating theCommunity...and Law Enforcement"
atwww.policeandautism.cjb.net make copies and hand them out. An expanded
version of this handout and other awareness and educational materials are available in my new book.

If
possible, make travel plans well in advance. Call the airlines andsecurity
companies (soon to be mainly federalized) and ask what you can do to help the security experience go more smoothly for the
person with autism and the security professionals they will interact with. If the trip has to be made suddenly, arrive extra
early, bring plenty of handouts and explain to the gate agent what your needs are.

Those
that have the time may want to inquire with their air carrier about assistance plans they may offer inexperienced travelers.
NorthwestAirlines, for example, offers the Adult Assistance Program for
a feeranging from $40.00 to $75.00. This may prove to be money well spent.
The program offers personal assistance from check-in, through security and boarding and through the destination airport. While
the program does not assist with eating, personal hygiene or medication issues, it does provide assistance through the crucial
security checkpoints. Parents and caregivers of a passenger using travel assist can also pass through security with their
loved even if they are not traveling with them. Special security passes would be issued in lieu of tickets. A program like
Northwest Airlines' Adult Assistance could be utilized by caregivers even if they are traveling with a loved one.

Anticipating
the worst is never a pleasant proposition. But it's something we do all the time in our everyday lives when we put on seat
belts, lock our back doors, pay the life insurance. The downside for not doing these things is extremely negative in each
example. But do we shudder in fear every time we do these things? Of course not. They are common sense options associated
with everyday life.

Taking
extra precautions is also an everyday consideration that those with

autism
that can, parents and caregivers also become accustomed to taking. When traveling through our communities, and airports, taking
the precautions--alerting security, carrying ID and informational handouts, considering the needs of others, anticipating
the possibilities--can help make our trips and travel a lot safer and a lot more relaxing. Give yourself at least two weeks
to seek the best that our airlines and airport security can offer. But it's never too late to alert the airlines and security
professionals to a special request for assistance.

Special thanks to Mike Flotteron of
Northwest Airlines for his assistance in preparing this report. Most major airlines offer programs similar to the Adult Assistance
Program. Check with your air carrier about special travelers services they offer.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Asperger's Syndrome: A Developmental Puzzle

by Michael McCroskery

Cognitive and social skills, which shape personality and
character, develop throughout life. However, genetic or environmental obstacles can obstruct development, especially early
in life. One such obstacle is Asperger's Syndrome.

Asperger's Syndrome (or AS) is a congenital neurobiological
condition that affects 0.25% of the population. AS is linked to autism spectrum disorder, and includes autistic-like behavior
and marked deficiencies in social and communication skills. AS individuals are of average to above average intelligence,
some with unusual gifts and creativity. As a diagnosis, it has been known in Europe since the 1940's, but has only been included
in our medical diagnostic manuals since 1994. Thus many adults and children remain undiagnosed. Consequently AS is relatively
unknown and not clearly understood, even among professionals.

AS is indeed a puzzle, and researchers are working to identify
the pieces and form them into a meaningful picture. My experiences as an adult recently diagnosed with Asperger's, together
with my studies in child development, suggest that individuals with AS are like young childrenstuck in time, so to speak,
never able to advance beyond early stages in social, cognitive and language development.

For example, most AS difficulties center around social
competencies. A salient characteristic of young children is egocentrismthe inability to recognize that other people think
and feel differently than oneself. Persons with Asperger's Syndrome remain in this egocentric state, unable to interpret the
thoughts and emotions of others, or to experience empathy. Another name given to this condition is "mind blindness"the incapacity
to visualize the mind states of others. Thus it is hard for AS individuals to develop normal friendships, as either children
or adults. Without empathy, they become emotionally stunted.

A related problem is the inability to carry out social
referencing through understanding nonverbal cues, such as facial expressions or body language. Such cues are "invisible" to
those with AS. A piece of the AS puzzle related to cognitive skills is attentiveness. "Attention span" is the number of mental
elements that one can remember at any given time. During preschool years children exhibit "centration," focusing on one piece
of information at a time, and briefly at that. The ability to process several elements simultaneously, or to remain focused
on a task, comes with greater cognitive sophistication. Unfortunately, the tendency towards centration seems to remain with
the AS individual into adulthood. One diagnosis commonly given prior to accurate diagnosis with Asperger's Syndrome is "attention
deficit disorder."

A third part of the Asperger's puzzle relates to language.
An early stage of language development includes "telegraphic speech" abbreviated speech in which words not essential to the
meaning of a sentence are omitted. People with AS seem not to develop beyond this stage, further stunting their communication
skills. The easy flow of spontaneous social conversation is usually beyond their capacities. They must learn social "scripts"
through special training and repetition. Even then, AS speech tends to be stilted and formal.

Also, children in early stages of language development
are quite literal. Figurative use of language, symbolic representation, nuances and double meanings are a later development.
Once again, the individual with Asperger's remains in a childhood realmthat of literalism. Linguistic sophistications such
as jokes, puns and idioms are hard for AS individuals to grasp. Even the most basic of social interactions become a confusing
and humiliating experience.

Understandably, AS individuals encounter enormous difficulties
during the transition into adolescence, and later into adult life, since they have not completed the requisite developmental
tasks or moved beyond early stages in language, cognitive and social skills. They frequently remain emotionally dependent
upon parents or family members, and suffer from separation anxiety and insecurity when trying to live on their own. Friendships
with peers, romantic relationships, marriage and parenting, and entry into the work world are usually beyond their capacity.
They remain, in many debilitating ways, stuck in time, trapped in the AS puzzle. They are, in essence, childlike beings attempting
to live in an adult world, but without the support and understanding that children are afforded.

Pervasive Developmental
Disorder

An overview for teachers and parents

1. Impaired Social Interaction

2. Impairment in verbal
& nonverbal communication

3. Restricted range of interest

1. Impaired Reciprocal Social Interaction:

-
lack of awareness of other's feelings

- does not seek comfort when distressed

- trouble separating from parent
- uses adult to organize & control environment; can't read parent emotions to know it will be safe

- Constantly feel in danger of or on the verge of disorganization - somewhat like knowing a little
of a foriegn language and then trying to fucntion in that country... missing info, don't know idioms, don't understand culture

3
Kinds of Pain these Children are Trying to Cope With:

1. Confusion - feeling lost

2. Overly Stimulated

3.
Emotionally out of control Adults usually try to help children by giving them verbal information and sensory stimulation ---->
PDD children withdraw

Child's Behavior is to deal with these 3 types of Pain:

- Repetitiveness/Sameness - trying
to reduce confusion

- Compulsion Behavior - an exaggerated attempt to insist on order; gain control

- Hand Flapping
or Tapping: provides a sensory stimulation that child has control over

- Tantrums - sensory information the child is
in control of; obliterates the rest of the world

- Withdrawal/Impaired Social Interaction: withdraws from social interaction
or stimulation that can't be understood; child controls situation by withdrawing

Combination of Sensory Processing
Problem & Social Defect:

- Every symptom or behavior exhibited is an expression of trying to cope with an overwhelming
world

- There is great variation in cognitive functioning of these children

- They need to learn that if they
don't understand something they need to ask

- Need to keep environment manageable and sensory input so child can function

-
Have to modulate kind and quantity of of stimulation according to child's response

PDD is a Spectrum Disorder from
severe to which a child can barely be diagnosed to very mild

Principles in Treating the Child:

1. Make environment
intelligent to child

2. Provide a lot of organizational structure/environment predictable(routines, picture schedules,
sounds mark transition, prepare for change with a calender,picture card, small activities to make time seem shorter)

3.
Do not Rush the child

4. Monitor level of stimulation in environment and regulate according to child's needs andcapacity
for regulating her/his arousal. Pay attention to regulatory deficits

5. Set up ways to monitor own self stimulation-
quiet place to retreat to; special object from home which helps calm the child, headphones & music,hands over ears and
close eyes, other calming activity

6. Teach child self-monitoring- How are you feeling? What are your hands doing?
How is your stomach feeling?

7. Teach child how to put a strategy into place independently once he/she can monitor
self. Before this teacher may need to cue child. (Teacher pulls on ear as signal)

8. Plan for highly stimulatiing activity
such as lunch room, playground, fire drill etc.. Donot send child until he can do it- this is when he wants to do it -
Starts slo and move to next step as child exhibits comfort:

a. Activity that is isolated

b. Adult joins

c.
One peer joins... etc..

* capacity for managing sensory information changes daily

9. Facilitate communicative
growth by simplifying language and eliciting then expanding the child's communicative efforts in the context naturally occurring
in the interaction:

- Treat acquisition of cognitive skills as secondary to social only

- Goal to be relaxed
& happy at school

- Don't be fooled by splinter skills - don't focus only on strengths because it will encourage
rote learning/memorization

- Monitor child's understanding and teach the child to monitor own understanding by learning
to ask for clarification

10. Indentify any existing areas of relatedness and work to expand them with the child. Give
the highest priority to pleasurable interactions with the child and to relating in thepresence of strong feelings. The
goal is to help the child develop a strong sense of self.

11. Provide opportunties for the child to regulate his/her
level of arousal and engagement

in socially facilitative manner (ie, quiet place to retreat instead of tantrum.
Allow the child to self regualte as much as possible, without withdrawal and without allowing him to control environment.

12.
Facilitate familial understanding of the child as having unique strengths and weaknesses and provide support to parents in
coping.

Additional Notes:

1. Perserveration- sign something is not right with child

2. Inclsuion may
be more than some of these children can handle

3. Large group activity may be too much

4. For unpredictable
situations ie substitute- may need to prepare child for these things with a visual "wild card"

6. Attachment to
Teacher- can't go to the bathroom without child becoming distressed;leave a scarf or necklace of clothing with child

7.
Separation - Mom puts on smock when going to work; child learns this signal and learns she will come back, adjusts to signal

8.
Child may need to leave classroom to calm himself (e.g., walk to drinking fountain or other side of school.

________________________

Michael McCroskery is an adult with AS. He graduated
with a BA in Communications from the University of Tampa in 1992. Michael decided to become an advocate in order to
help parents of children who have the same disability as he. This article is based on a Child Development course Michael took
which has provided much fuel to the AS awareness project he is currently working on. He is also currently working on getting
his CDA.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Brick Township New Jersey
and Increased Autism Rates

Adelle Tilton

Increasing without explanation

April, 2001

April is Autism Awareness
Month and as a part of that event in 2001, The Montel Williams Show presented a program on April 12 about autism. This is
another example of a major television program making autism a priority issue in their coverage. This show, featured people
from around the country and especially people from Brick Township, New Jersey, is considered to be one of the best coverages
provided by television yet.

The show, covered such
topics as clusters of autism, genetic research, ABA, vaccines, diet, the increase throughout the country, the Congressional
Autism Caucus, and the Open Your Eyes project. Additionally congressional hearings on the cost of raising individuals with
autism were discussed and how that figure impacts the general public is very comprehensive.

Brick Township was investigated
by the CDC because of its high incidence of autism in its children. The report to the parents of the Brick Township children
stated that:

At
the request of the New Jersey Department of Health and Senior Services and congressional district representatives, the Centers
for Disease Control and Prevention (CDC) and the Agency for Toxic Substance and Disease Registry (ATSDR) investigated if the
rates of autism among children in Brick Township, New Jersey were higher than expected. Published prevalence rates were examined
and researchers looked into whether there were possible links to environmental exposures.

Autism
is a spectrum of disorders that are complex and lifelong. Individuals with autism have problems with social interactions and
communication skills as well as a tendency towards restrictive or repetitive interests and behaviors. Autism spectrum disorders
(ASD) is a term used to describe the continuum of functioning among persons with autism. ASD includes autistic disorder, pervasive
developmental disorder - not otherwise specified, Childhood Disintegrative Disorder, and Asperger’s disorder as defined
by the "American Psychiatric Association’s Diagnostic and Statistical Manual - Fourth Edition (DSM-IV)."

CDC’s
expertise was called upon because of the complexity of investigating a behavioral disorder such as autism and the fact that
CDC was developing epidemiologic methods that address the unique challenges of autism.

The
prevalence investigation identified children with possible autism whose parents were residents of Brick Township during 1998.
The autism diagnosis was verified through a clinical assessment.

The
rate of autism among children in Brick Township was 4.0 per 1,000 children aged 3 through 10 years. The prevalence of the
more broadly defined autism spectrum disorder was 6.7 per 1,000 children. These prevalence rates are higher than rates reported
in other currently published studies from other countries.

Whether
the Brick Township rate is unusual relative to other U.S. communities is uncertain. No current data on the prevalence of autism
in the U.S. is available.

A
few very recent studies in other countries have found high rates. Service provider data in the U.S., e.g., special education
data, show increasing numbers of children with autism receiving specialized services.

There
is ongoing scientific discussion about whether higher rates of autism worldwide reflect a true increase over time, a greater
awareness of these disorders, improved case finding techniques, broader diagnostic criteria, or a combination of all these
factors.

Other results from the
Brick Township investigation:

* Sixty of the 75 potential
case children met the criteria (DSM-IV) for an ASD.

* Thirty-six of the children
met the criteria for autistic disorder.

* There were twice as
many boys than girls with autistic disorder.

* Sixty-three percent
of the children had mental retardation.

* Seven children had
a brother or sister who also had an ASD.

Because of the lack of
data on autism in the U.S., monitoring the prevalence of these disorders in several communities across the country would be
helpful to identify the magnitude of this health problem and how it varies in different population subgroups. In addition,
we need to do large-scale epidemiologic studies to begin to understand the cause of this important health problem.

After 18 months of normal development, I was
hit with the "autism bomb," became nonverbal, and was diagnosed with "Atypical Development with strong autistic tendencies
and psychotic." The diagnosing professionals considered me "too sick" to be treated on an outpatient basis and recommended
that I be institutionalized. However, my parents, refuting their suggestions, supplied a crucial, home-based early intervention
program emphasizing sensory integration, music, movement, imitation and narration -- all long before such service was formally
conceived.

My mother would try to get me to imitate her, but to no avail. Finally, she imitated me; and in doing so,
I became aware of all within my environment. The educational implication of this strategy is the importance of meeting the
student (whether on the autism spectrum or not) where they are cognitively and developmentally before new material can be
learned. If that means flapping and rocking with the child until they are aware of your presence, then that is what should
be done before moving on to other material. My parents had no psychological or educational experience, but just did what good
parents needed to do for their child. Although I didn't start to regain verbal skills until age four, with the help from my
parents and later from teachers and professionals, I am now completing my doctoral degree in special education at Boston University,
with a focus on helping autistic people develop their capacities to the fullest extent possible.

At age four, after
my parents finally convinced the school that originally recommended I should be institutionalized to accept me, I spent a
year there before transitioning to a nursery school program. Unfortunately, entering public school kindergarten at age six
was an academic and social disaster. Although I was in regular education, I probably needed a program splitting my time between
a special education resource room and regular classroom with assistance from an aide.

Elementary School

During
elementary school I was usually almost a grade behind in math and reading. My first grade teacher told me that I would never
be able to learn mathematics -- but somehow, I managed to master the subject well enough to teach statistics at the college
level. Another teacher informed my astonished parents that I had trouble reading, despite the fact that I was reading the
newspaper at home. Unlike educators of today who focus on autistic students' strengths, my teachers never developed math and
reading lessons based on the foot-high stack of astronomy books on my desk that I read and copied diagrams out of aat a furious
pace.

Socialization was also very difficult due to the teasing and bullying of children that are different that occurs
in the public schools. Fortunately, educational professionals now realize that bullying is a behavior not to be tolerated,
as opposed to a developmental phase that children need to go through or experience.

Improperly understood, sensory
integration dysfunction can severely impede functioning in a classroom. For example, visual sensitivity to fluorescent lights
can make them appear like strobe lights to a person with autism, creating an unsuitable environment for learning. An elementary-school
child in this situation may very well get out their seat to shut off this source of sensory overload that, in addition to
being a distraction, may cause physical pain. I have seen the eyes of people of those with sensory sensitivities vibrate in
synchrony with the 60 Hz. cycling of fluorescent lighting. The teacher, unaware of the student's condition may interpret this
"out of seat" activity as an avoidance behavior. However, in reality, this behavior is an attempt to eliminate a sensory assault
that interferes with functioning in class. Alternatively, a child, more severely affected by autism, who is nonverbal and
less aware of the source of her sensory overload, may simply have a tantrum.

Another challenge for many students with
high-functioning autism and Asperger Syndrome is literal interpretation of language. For example, in the fourth grade I had
a friend who told me that he "felt like a pizza." Unable to understand the idiom, I thought that he meant that he looked like
a pizza and I tried to assure him that he didn't smell nor look like this popular American food. Many years later in college,
while ruminating about this event, I finally understood that he felt like eating a pizza.

Middle And High School

Middle and high school often overwhelm children on the autism spectrum due to the increasing complexity of interpersonal
relationships, homework, and the act of transitioning between classrooms for different courses. Students begin dating and
there is increased emphasis on conformity. Homework requirements from multiple courses demand proper allocation of time. For
those with visual-perceptual challenges, getting from one classroom to another can be like walking through a maze. Some accommodations
for these children include working with an aide for social interaction skills. Keeping a schedule detailing times and location
of classes, as well as due dates, for assignments can help with getting students to classes and completing homework on time.
The act of writing as well as converting verbal information into words on paper during a lecture is also a significant challenge.
Providing outlines and class notes are especially helpful, as they allow the student to focus on processing the subject matter
rather than frantically writing down what is said in the lecture or copying overheads. In fact, to me, accommodations are
just extensions of good teaching practice. All students can benefit from having a topical outline and class notes.

Fortunately,
for me, middle and high school was actually better than elementary because I was allowed to specialize in my favorite interests
of music and bicycles. Middle and high school student organizations can provide a place where a child on the autism spectrum
can use their special interests to base their interactions with their classmates. For example, I spent much time in the band
room and started a bicycle club with much success. My grades improved dramatically because I finally figured out what teachers
wanted from me in terms of schoolwork. In addition, getting along with other students became easier because I realized that
socialization using words, rather than sound effects from the environment was more efficient in communicating with other students.
However there was still a degree of bullying. For me, a social aide during elementary school would have helped greatly in
understanding my teachers' expectations for quality schoolwork and meaningful interactions with my classmates.

College

College, like for many people with high functioning autism and Asperger Syndrome, was a sort of utopia. Gone was the
ostracizing from the public school cliches for failing to fit into what they determined as popular. Instead I found people
with similar interests. For example, if I wanted to ride my bicycle at midnight, I could usually find another person in this
25,000-student university to ride with me. Students interacted for the pleasure of exchanging ideas and enjoying each other's
company rather than how "well" someone fit in.

Life Beyond School

At this time, I teach college-level
special education courses where I incorporate my personal experiences to help future teachers of people with autism and other
special needs. Finally, I serve on the board of directors for several national organizations pertaining to autism such as
the Autism Society of America, Unlocking Autism, Asperger Syndrome Coalition of the United States, and as Board President
of the Asperger's Association of New England.

In addition, I work with people on the autism spectrum using music and
computers. Depending on the severity of the autism, music may be used to develop skills in socialization and communication,
as well as gross and fine motor control. Or, as outlined in detail in my book, Beyond The Wall, I may actually teach them
how to play an instrument. In addition to working on motor and breath control, the child benefits greatly from having a skill
that can serve as an avenue for socialization.

Ongoing Educational Challenges

Some challenges that
remain from my childhood diagnosis of autism include accurate reading of nonverbal communication, subtle social situations
such as office politics, and facial recognition. It is difficult for me to remember the faces of my students in class so I
take attendance at the beginning of every session in order to match the name to the face of the person who answers. Additionally,
taking notes in fast-paced lectures remains a significant challenge. Instead of spending a lot of time and energy improving
my note-taking with only marginal results, I devise my own accommodations, such as recording the lecture, typing the lecture
notes into a laptop, asking to see another student's notes, or even asking the teacher for his or her lecture notes.

In
summary, it is important for educators to realize that due to sensory issues, people who are on the autism spectrum often
perceive the environment differently than most others. In addition, long-term prognosis of people diagnosed with autism spectrum
disorders is difficult at best. While the effects of autism do not disappear, it is possible through proper early intervention,
support and education, leading to self-awareness and accommodation to live successful lives. The nonverbal, self-abusive,
tantrumming toddler may become the child that makes it through public school and high education to become an independent,
productive citizen leading a fulfilling life with merely residual outwardly visible effects of the autism spectrum. Finally,
as with all humans, the possible achievement of those on the autism spectrum is unlimited. The challenge is finding the key
to unlock that potential.

[Keep this on file for when needing a one-page, less than 500 word
plain English explaination of autism.]

Mostly we don't know what causes autism, so it's best described by
behavior. A collection of extreme behaviors are measured to see if the person, usually a very young child, falls within the
label of Autism Spectrum Disorder. It's called a spectrum because it can be a wide range and differing collection of behaviors
that fit the label. These behaviors include repetitive motions, self-isolation, loss of eye contact, restricted use of language,
difficulties understanding the emotional feelings of others, strange taste for foods, mental retardation, sensitivity to sounds
or light or touch and many more, in varying degrees. Every person with autism seems to have their own unique snowflake of
symptoms. Something about the behaviors have to be so extreme as to be disabling. Just being a little weird or awkward alone
isn't enough to be considered on the autism spectrum.

There are theories that the disabling behaviors are the result of
early physical brain damage caused by a harmful thing or combination of things in the environment, along with having a genetic
weakness for the disorder. But we don't know what genes are responsible. Some believe that the harmful things in the environment
are vaccines which contains poisonous materials like mercury or viruses.

The most popular treatments today are behavior training done at an
early age and eliminating things like dairy and wheat products from the diet; they seem to make things worse for some kids.
Many parents find supplements help. Others try to get any lingering mercury out of their children's body with a medical treatment
called chelation.

We don't really know what causes it, exactly what harm it is doing
to the brain or to the rest of the body or how to cure it. More doctors are say ing that autism is more than just having a
broken brain, but that many of the people are sick as well from the toxic assaults.

The government doesn't put much effort into finding out what causes
it, because if it turns out to be vaccines, and there's a growing body of science that supports this theory, it means the
government itself is the source since they make the vaccines mandatory and are supposed to be the ones who make sure they
are safe. It's human nature to try to find elsewhere to blame for one's serious mistakes, even more so for government agencies.
But if it turns out to be vaccines, it would be the single greatest medically created public health disaster in modern history.

Newton
parent Jessie Solodar marveled when, at 21/2, son Dan learned the names of all the instruments in an orchestra and often pretended
to be a conductor. ''We thought we had a maestro on our hands,'' she said. Even today, when you meet Dan Rozenson, a 12-year-old
Harry Potter look-alike, you think ''smart kid.''

And he is. But that's only half the picture.

Dan has a verbal
IQ of 130 - and Nonverbal Learning Disorder, a diagnosis education specialists say is becoming increasingly common. Specialists
disagree about whether it is related to autism or is a distinct disorder, but the diagnosis is growing to the point where
one special education director described it as ''the flavor of the month.''

Parents, however, describe wrenching experiences
with schools and teachers who doubt something is wrong because children appear intelligent.

''It's a relatively new
category,'' said Boston lawyer Robert Crabtree, who helped write the state's special education law. ''Whenever school systems
run into a category that mostly affects behaviors, social skills, and organizational skills, they tend to react by saying,
`That's not our problem.'''

Although schools have become practiced in serving children with learning disorders, including
dyslexia and Attention Deficit Disorder, NLD presents a tougher problem. Children with NLD are far from being ''nonverbal''
and are, in fact, extraordinarily verbal, memorizing facts and speaking with an impressive vocabulary. Their troubles come
with visual and spatial abilities, gross motor skills, balance, organization, interpreting social interactions, and anything
that requires making sense, whether of writing or someone's tone of voice.

So although students with NLD are often
viewed as gifted early on, by late elementary and middle school they're confounded by problems, said Ann Helmus, neuropsychologist
and codirector of the Children's Evaluation Center in Watertown.

''For these guys, everything is a struggle,'' she
said. ''Recess is a struggle. They can read but they can't comprehend. They can do math computations, but they can't solve
problems. They can spell, but they can't produce written compositions.''

One mother described taking her 11-year-old
son with NLD to see ''Harry Potter.'' He loved the movie's costumes and scenery, but couldn't follow the story. Instead, he
focused on the fact that in one scene, the camera is reflected in Harry's glasses.

Dan, and students like him, may
appear to teachers like intelligent students who are lazy or acting out. ''Dan is a very bright boy who has a lot of potential,''
his teacher wrote in his third-grade report card. ''He is very capable of doing the assignments, but lacks the initiative
or desire to complete the work.''

In reality, though, students like Dan are working hard but not making progress, which
can sink their self-esteem and trigger depression, said Sue Thompson, an educational therapist in Vallejo, Calif., and an
authority on NLD. ''I call it, `The illusion of competence,''' said Thompson. ''These individuals look very competent, so
when they mess up it looks like purposeful behavior - and people don't suspect neurological incompetencies.''

That's
the greatest frustration, say parents and children with NLD. Dan said he has been made fun of for not completing homework
- even as he has pointed out to a teacher that Moses Fleetwood Walker, not Jackie Robinson, was the first black to play baseball
in the major leagues.

''Having the diagnosis, I can have a partial explanation for why my homework sometimes doesn't
get done,'' said Dan. ''It sort of states that I'm not lazy.''

It's comforting to have a diagnosis, but parents say
it's still challenging to get proper help. Natick parent Barb Wilder-Smith, who has a 12-year-old son with NLD, started an
NLD support group two years ago. Since then, she said, the electronic mailing list has grown to 172, and 50 people attended
the last group meeting.

''When I started this two years ago, I longed to talk with other families of children with
this diagnosis,'' she said. ''I had not envisioned the interest and need.''

Although there always have been people
with NLD - many cite the stereotypical class ''geeks'' who never fit in socially as possibly having the disorder - the very
educational reforms heralded as improvements for most children such as cooperative learning, critical thinking, and problem-solving
instead of rote memorization and computation are highlighting the weaknesses of students with NLD.

''Education is
a preparation for the future and if we are failing groups of students by not preparing them to be independent individuals
contributing to society, then we are not doing our jobs as educators,'' Thompson said.

It means schools have to go
beyond looking at the student's normal or even high IQ, said Janice Ware, psychologist and associate director of the Developmental
Medicine Center at Children's Hospital in Boston. ''The real issue is recognizing that this is an impediment that does require
special education intervention,'' she said.

Judith Hoyer, director of student services for the Medway Public Schools,
said schools have to figure out which specialist can help a child most. ''We are asked to prioritize and not to work with
an array, but focus on the most important things we can do in school to help that child access the curriculum,'' she said.

But
Helmus said children with NLD often need a range of help. Plus, she said, unlike other learning disabilities in which children
get classroom support to do the work on the one hand and help to correct the problem on the other, there is no fixing NLD
- only teaching students ways to cope.

At the private Corwin-Russell School in Subdury, which works with learning disabled
children of above-average intelligence, teacher Judy Seligman said the school makes instruction in reading and responding
to social cues part of the curriculum.

Solodar said it has taken time - and some painful experiences such as the D-minus
that Dan earned in a sixth-grade project because he couldn't interpret the teacher's instructions - but Dan is getting help
and his grades and self-confidence are rebounding.

But finding the right help is not easy. Mairead Reddin of Medway
feels years of her 17-year-old daughter Fiona's life were wasted for lack of the proper diagnosis and help. ''The single most
important thing that would have helped Fiona would have been first of all for the school system to be accepting and willing
to work with her,'' she said.

And although Fiona, who comes across as intelligent and articulate over the phone, may
graduate from high school this spring, Reddin feels uncertain about the future. ''I have well-meaning friends and relatives
who say, `Fiona will do fine, she's a great kid,''' said Reddin. ''Well, I hope they're right because I have severe doubts.''

After the horrible daily battle with her 4-year-old
daughter to get her dressed and into her car seat, the Spring Lake woman would look at Tori in the rear-view mirror and see
a little girl with sad eyes and slumped shoulders.

She knew combing Tori's lush brown hair shouldn't be a war of wills.
And it wasn't normal for Tori to shriek in pain when her mother trimmed her fingernails. She felt like a bad mother with a
bad child.

"Every day was such a struggle for her," said Orent, 35. "Getting out the door was a major ordeal, getting
shots (at the doctor's office) was a nightmare. Every day I knew it was going to be bad."

Frustrated and desperate,
Orent turned to the Internet. She typed her daughter's symptoms into the computer, and was hugely relieved to find she wasn't
alone.

"Finally
somebody knew what I was talking about," Orent said. "It was nice to know that I'm not crazy and I'm not a bad parent."

The
disorder, which is not well-known, is found in some but not all children who were born prematurely, who have attention deficit
hyperactivity disorder (ADHD), cerebral palsy and autism, said Marlise DeShane, an occupational therapist with Spectrum Health's
Rehabilitation Services. But it also occurs in children who fit none of those categories.

"This wasn't something I
could help and it wasn't something Tori could help," Orent said.

No one knows how common DSI is; no national statistics
are available. In the Grand Rapids area, Mary Free Bed Rehabilitation Center has offered diagnosis and treatment for about
15 years and sees about 75 children and teen-agers a year. Spectrum Health Rehabilitation Center started its program last
summer and has seen about 35 children. The Orents and other families who have struggled with DSI hope that a wider understanding
can get help for these children more quickly.

Some, like 14-year-old Dustin Shane of West Olive, bear lasting emotional
scars from a lack of proper treatment.

"Dustin wasn't diagnosed (with DSI) until he was 11," said the boy's stepmother,
Deb McClellan, 42. Unfortunately, by that time his self-esteem had been "destroyed," she said, because he had such a hard
time in school.

Difficult infancy

Tori, born six weeks prematurely, was difficult from the get-go, her parents
say. She didn't like getting dressed, didn't like diaper changes, was a fussy eater, and didn't enjoy the cuddling that babies
usually love.

Orent and her husband, Doug, thought Tori was "just a cranky baby," she said.

But by the time
Tori was 4, things were worse. She awoke eight or nine times a night, was still a fussy eater, and would only wear clothes
that were too big and washed a hundred times. She didn't want to play with other children and had tantrums her mom calls "meltdowns"
over simple daily routines.

The only time she seemed happy was when she was playing alone or spinning herself in her
backyard swing. "She could spin and spin and not get dizzy," said her mother.

Tori's pediatrician could offer no help.
He thought it was a parenting problem and kept telling Orent to pick her battles and hang tough.

"But 'timeouts' didn't
work; nothing worked," Orent said.

The disorder can be confusing for those who aren't specialists because it often
appears in combination with other diagnoses, such as autism and ADHD, DeShane said.

In fact, it is common for children
who seek therapy for DSI to have multiple diagnoses, said Shannon Mechan, an occupational therapist who provides DSI assessment
and therapy at Mary Free Bed.

The disorder often is perceived as a parenting problem or a psychological problem, said
pediatric psychologist Steve Pastyrnak.

"We're really looking at a physiological problem. But it's not well-recognized.
(Referrals) are very rarely coming out of a pediatrician's office," said Pastyrnak, who works at Pine Rest Christian Mental
Health Services and Spectrum.

Therapists think many children with this sensory dysfunction are not diagnosed until
they are school age. Others are misdiagnosed as having behavior problems, learning disabilities or hyperactivity. Some, like
14-year-old Dustin, have been put on ADHD medications that mask the sensory problems.

"When the terrible twos started,
Dustin never outgrew them. He would have screaming fits," says McClellan, his stepmother.

His kindergarten teacher
wanted him tested for ADHD, but the doctor said he was too young.

First grade was "a nightmare," McClellan remembers,
because when Dustin misbehaved, the teacher scolded him and he would start screaming.

Pediatricians said he was just
being willful. Meanwhile, he was barely passing in early elementary and hated school. In third grade, he was diagnosed with
ADHD and put on Ritalin, which helped him concentrate but didn't solve the sensory problems.

It took a head injury
to get Dustin a proper diagnosis. When he went to Mary Free Bed for rehabilitation after a bike accident, therapists there
immediately recognized the sensory problem.

Tori has undergone four months of therapy with DeShane at Spectrum Health, and today
she is a happy 4-year-old who hugs people, wears shoes and clothes that fit, and interacts with other children -- including
her 2-year-old sister, Hope. She is sleeping well, gets into her car seat without a fuss, and recently even used glue -- something
she wouldn't touch before -- to make her dad a Valentine.

"I get big hugs now and lots of smiles," DeShane said. "And
Tori has improved attention. When I first saw her she couldn't sit for 20 minutes to do a (Valentine) project."

It's
important for children with DSI to have the adults in their lives understand they aren't being naughty; they have a physical
problem, DeShane said.

The brain is supposed to label and organize all sensations. When you take a sip from a steaming
cup of coffee, your brain should interpret the aroma and taste after getting signals from your nose and taste buds and then
tell you if it's hazelnut or French vanilla.

But if the brain misreads the signals, the steam might feel like a blast
from a furnace and the coffee might taste bitter. Occupational therapists have taken the lead in assessing and treating
this disorder because sensory awareness and how it affects movement is their expertise, said Francie Dietrich, director of
outpatient therapy at Mary Free Bed.

A. Jean Ayres was the occupational therapist who first researched and described
sensory integration dysfunction. In her book, "Sensory Integration and the Child," Ayres writes that the disorder is like
a "traffic jam" in the brain. Some pieces of sensory information get tied up in traffic, and that means parts of the brain
don't get the information they need.

In some children, these stalled sensory signals make them crave stimulation.
In Tori's brain, the signals caused normal sensations to hurt or feel unpleasant, so she tried to avoid them.

The
problem can run in families. And symptoms can range from mild to severe, with no two people exactly alike, said Mechan, who
has seen children as young as eight months and as old as 18. With treatment, most see improvement within several months.

Treatment
works on the large muscles as well as fine motor skills, training the brain to properly read sensory signals. Tori performs
coordination tasks while swinging on a platform or a "mushroom swing."

DeShane helped the Orents understand what the
world was like for Tori.

"It would be like being in Central Park where there are a lot of muggings and rapes and you
had to walk across the park alone at 2 a.m.," Orent said. "All your senses would be heightened. Well, that's the way Tori
felt all the time."

DeShane sent Orent home early in Tori's therapy with a soft-bristled surgical scrub brush and
instructions to brush Tori's arms, legs and back every two hours. She also applies deep pressure to her wrists, elbows, shoulders,
ankles, knees and hips. DeShane told her the brushing and deep pressure causes a chemical reaction in the body that releases
chemicals that are calming.

The chemical release can last from 90 minutes to two hours, Mechan said. And eventually
the body becomes able to release more of that chemical on its own.

Orent admits she felt silly doing this at first,
but she saw results the first week. "We didn't see how it was going to work, but all I know is, it worked. When I said it's
time to get ready for preschool, Tori said, 'OK."'

The Orents still use the brushing twice a day. They also installed
an indoor swing for her because swinging has a similar calming effect.

Dustin McClellan also uses brushing and deep
pressure to keep himself calm. In public places, bear hugs from his parents will do it, too.

Deb McClellan tells anyone
who will listen, "Do not accept a diagnosis of ADHD without a second opinion," and at least consider whether your child has
some of the characteristics of DSI.

Treatment for DSI can make it less necessary for hyperactive children to be on
medication, Mechan said. And if medication for ADHD isn't doing the job, parents should consider having the child assessed
for DSI. A physician's referral is required.

Tori is fortunate that her sensory problems were discovered before she
started school. And Dustin, who has some deficits from the head injury, is slowly rebuilding his self-esteem after years of
feeling like "a bad kid."

"I was frustrated and angry," Dustin says of those early school years. "But I feel kind
of good now because I have so many people who understand."

DENVER, CO -- The transition from childhood to adulthood means
we gain some cognitive abilities, but lose others, according to a scientific paper presented at the American Academy of Neurology
Annual Meeting in Denver, April 13-20. The conclusions from the relatively small study are preliminary.

"Humans gain
an expansion in the scope and depth of knowledge and comprehension during adolescence," according to study author Gabrielle
M. de Courten-Myers, MD, of the University of Cincinnati College of Medicine. "However, about the same time we lose some ability
to acquire new sounds and speech patterns. In this regard, adults are more limited than children."

Researchers at
studied the post-mortem cerebral cortexes of six 12- to 17-year-olds and five 17- to 24-year-olds. All of the individuals
had been of normal health and intelligence.

They studied 43 different areas in each brain hemisphere, measuring for
cortical thickness, neuronal density and pyramidal neuronal size. Corrections were made for gender differences in the size
of the brain.

The average pyramidal soma size was 15.5 percent smaller in the older age group than in the younger
one. This suggests that these nerve cells undergo "pruning" or "streamlining" of their processing during adolescence, said
de Courten-Myers.

The study was supported by the Foundation
for the Prevention of and Research on Mental Retardation, Geneva, Switzerland.

The American Academy of Neurology,
an association of 18,000 neurologists and neuroscience professionals, is dedicated to improving patient care through education
and research. For more information about the American Academy of Neurology, visit its website at

My child has what? It's a question many parents ask when told a son or daughter has Asperger's
syndrome. They've often never heard of the devastating neurological disorder, let alone known anyone else
who lives with it. But that may be changing fast. In Spokane as well as the rest of the country, an increasing
number of children are being diagnosed with Asperger's syndrome, a form of autism that wreaks havoc on one's
emotional and social life.

These kids'
brains are wired differently, making it hard to understand social cues and body language most people pick up instinctively.
They may not notice a yawn, a frown or raised eyebrows. They may overlook jokes, or interrupt constantly
without thinking it rude. Yet because children with Asperger's are more verbal and tuned in to the world
than those with classic autism, people sometimes think they're just socially inept or eccentric.

It's no wonder
Asperger's syndrome seems to be sneaking up on society. Viennese pediatrician Hans Asperger first described the pattern
of symptoms in 1944, but only eight years ago was it officially recognized by the American psychiatric community.
Now, some experts believe it will outpace autism.

Inland Northwest
teachers, doctors and parents are taking notice. Because the diagnosis is so new, they don't know how many children
here have it. But professionals agree the numbers are rising. "Five years ago, I never got a call about
Asperger's," said Mark Derby, a Gonzaga University psychologist who assesses children with severe behavior disorders.
"This year, I've had maybe 10 calls."

As children
are diagnosed, educators struggle to find the best ways to teach them, said Peggy Davey, a speech-language pathologist
in Spokane District 81 schools. "We're trying to become more expert in this area, because more and more
of these kids are popping up."

The Autism
Outreach Project, created by the Office of the Superintendent of Public Instruction, decided to count students with
Asperger's because so many schools suddenly want help understanding it, said Crystal Gray. That count isn't
complete. Still, she said, "we recognize we're seeing an increased need in our schools."

Already, statistics
show a sharp rise in autism among Washington school kids - from 436 in 1996 to 2,104 last year. In Spokane County,
the numbers jumped from 25 to 138. Why the increase in Asperger's syndrome? Better diagnosing and a
growing awareness among doctors and parents contribute. Some doctors are also diagnosing children they believe
were mislabeled in the first place, perhaps with attention deficit disorder or something else with overlapping
traits.

But as with classic
autism, the exact cause of Asperger's isn't known. Some believe a genetic factor exists, while others suspect infections
during pregnancy that affect the brain. Some people think vaccinations trigger the disorder - a theory
research disputes. Whatever the cause, research shows boys are diagnosed with Asperger's 10 times more often than
girls.

Many
children are diagnosed about the time they enter school and their social and sometimes physical awkwardness becomes
obvious. While classmates chatter away, kids with Asperger's often have flat voices and stilted speech, as ifreciting
or reading text. They may talk too much or not enough and almost solely about their interests, which can be extremely
narrow. Some children want to talk about only elevators - how they work, various types, locations around
town - or about computers, plumbing fixtures, VCRs or baseball statistics. All kids do that, right? Not to this
degree. The fixation can last for months or a lifetime. Compounding the problem, kids with Asperger's don't
recognize others' boredom.

Physical awkwardness
makes some kids stand out even more. Glenn Tabbert, a 12-year-old Valley Christian School student, has been reading
since age 3 and soars to the top level of computer games. "I do well in s-p-e-l-i-n-g," he said recently. But
he's "not a recess person" and usually paces instead, Glenn said. "I dislike physical education. Even though I can
lift about 20 to 30 kilograms, I have poor agility and poor endurance. After like 50 or 60 yards, I get tired."

Parents
panic when they realize their kids, while having normal to high intelligence, don't attract friends or party invitations.
It's worse when the children themselves begin to realize how different they are.

McCall
Vaughn, a South Spokane student, describes her trouble fitting in: "When we're doing lessons, this one boy says,
`Duh!' and gives me this weird look. Sometimes I do things wrong, and they yell at me and laugh at me. I don't
like it. In kickball, I don't know whose team I'm on because they fight over whose team I'm on."

Anxiety
from not fitting in is common and can spiral to other problems, such as depression or obsessive-compulsive disorder.
Making it worse, parents must educate teachers and classmates about Asperger's every time their child switches
classrooms. They explain again how sudden deviations from routine can spawn stress or tantrums.

"They're
very confusing to most people because it appears they're in control of their behaviors and willfully misbehaving,"
said Tom Weddle, an education consultant who works with Asperger's students at several Inland Northwest districts.
"It's partly that their language skills and cognition are relatively intact."

Kids
with Asperger's often end up in classrooms for children with behavior problems, which can make matters worse, said
Weddle. Some districts are designing classrooms just for children with autism and Asperger's. Seattle has
a program for kids with Asperger's syndrome and high-functioning autism. Central Valley School District has a preschool
class for autistic kids. And in Kennewick, educators are designing a room where Asperger's students can
get extra help with academic and social skills, said autism specialist Carol Girard.

"Some
of them need a quiet place to do work," said Girard. "Maybe it's a place to come take a break." If one group
of parents, educators and medical professionals succeeds, Spokane will become home to a new regional resource
center for people with Asperger's syndrome and other disorders on the autism spectrum. The grass-roots group
is considering what the center would cost and which organizations might fund and house it, said Dr. Peter Holden,
a Spokane developmental pediatrician.

"A
lot of things that need to be done for these kids aren't being done very well," said Holden, who hopes the center
would change that. It would provide training for parents and guidance for people looking for appropriate
jobs and homes, said Dawn Sidell, who has an autistic son and is spearheading the project. A child could be assessed
there, or referred to specialists trained in autism and Asperger's.

"There
are kids around here not being identified or being misidentified," said Elizabeth Mathes, director of the Panhandle
Autism Society in North Idaho. "There's a few professionals regionally who know Asperger's well, but they're
few and far between and difficult for parents to find."

Families
living with Asperger's say they desperately need the support. Some make their households as orderly as possible for
their children, while others split up under the pressure. One Spokane woman changed her speech patternsbecause
her son took everything so literally. "It became the art of questioning and the art of speaking. Everything had to
be 100 percent clear.

When there were no
gray areas, our lives became easier. Our lives became pretty much clinical." At 21, her son now lives on
his own and works in a restaurant. She feels lucky. "We're highly educated, intelligent, don't do drugs or alcohol,
had money and families to help (us). And we almost didn't make it. He almost didn't make it."

People
with Asperger's syndrome are more likely to be depressed and even suicidal. But given proper guidance, they can go
on to lead fairly normal lives. Like the restaurant worker, they learn to interact by modeling others. His
mother recalls him saying: "What I do is study people. And then I just do what they do."

Most
important, people with Asperger's need to find a lifestyle that fits. It may be easier for adults, with the teasing
and peer pressure of school only a memory.

Sometimes,
the obsession that annoys their friends secures their future. A child mesmerized by computers may become a talented
programmer. Someone who memorized dog manuals front to back might make a meticulous groomer. "If we can
get them graduated, educated and get them into adult niches, I'd say the prognosis is fair," said Derby.

Standardized tests can include a variety of tasks designed to garner
knowledge about an individual or groups knowledge, abilities or other traits. These sets of tasks are carefully assessed to
ensure that they validly and reliably measure given characteristics.Typically,
this process involved administering the test to a sample of individuals who are representative of the population on whom the
test will be used. Standardized tests may be administered individually or as a group.

A discussion of group administered standardized tests, such as the I-STEP,
is certainly important but will not be addressed here.Students scores on these
tests have less impact on intervention and programming decisions for individual students. Often, group administered tests
serve only as a screening procedure for referring students for special education eligibility assessments or, more obviously,
for assessing the achievement of the school as a whole. Group administered assessments are rarely adequate for assessing an
individual students academic performance. Because they were developed with the needs of individuals with autism in mind, standardized
assessments used to diagnose Autism, such as the Autism Diagnostic Observation Schedule (ADOS) (Lord, Rutter, DiLavore &
Risi, 2000) are also omitted from this discussion.

What are individually administered standardized tests?

Most state and local educational agencies require the use of individually
administered standardized tests when making special education eligibility decisions.Selected tests may include intelligence tests (which yield IQ or ability scores), academic tests (which measure achievement),
and personality tests (which yield emotional or behavioral information).It is
the responsibility of the school psychologist to select which tests will best provide information to address the referral
question. Once tests are selected, the school psychologist makes decisions about how to best administer the instrument and
interpret the results. Standardized assessment tools have rigid administration guidelines. The obtained scores are only valid
if these guidelines are followed.

What does this have to do with Autism?

For students with Autism spectrum disorders (ASD), standardized assessments
present a host of difficulties. When testing children with ASD, it may be difficult or impossible to adhere to the administration
guidelines and still elicit the students best performance.

Tests that are highly dependent on language comprehension, for example,
may be biased against students with ASD (Watson & Marcus, 1999).Specifically,
tests that require lengthy verbal directions and verbal responses are almost always inappropriate. Even on the performance
subtests, receptive language skills are required to understand the directions. The communication deficit faced by all students
with ASD puts them at a disadvantage on tests dependent on receptive and expressive language use.

Other characteristics of Autism spectrum disorders affect the standardized
testing situation. In addition to language skill deficits, a student with ASD may lack other skills required in the testing
situation. Students with ASD, regardless of level of functioning, possess deficits in social skills. Standardized tests require
some level of social interaction. It may be difficult to perform well on an individually administered assessment without reciprocal
social interaction skills. Atypical interests, repetitive behaviors, stereotypic behaviors, disruptive behaviors, and inattention
may further complicate the testing situation.

Arent there any alternatives to standardized tests?

Yes, school psychologists may choose to administer nonverbal intelligence
assessments to students with ASD, rather than altering the standardized administration procedures or foregoing the procedure
all together. The Test of Nonverbal Intelligence, 3rd Edition (TONI-3) is a valid and reliable alternative that
does not require the examinee to read, write, speak, or listen. The Leiter International Performance Scale-Revised (Leiter-R;
Roid & Miller, 1997) is another option.The Leiter-R Roid & Miller, which
does not require the student to use or to understand speech,has few timed items
and will not penalize students for slow responses. While these instruments do minimize the communication difficulties that
may interfere with obtaining the students true score, they do require social interaction skills, attention to tasks, and other
appropriate test taking behaviors that may be difficult for students with ASD.

At times, it may be possible for the psychologist to forego the use
of standardized tests during the assessment process (i.e., when the school district does not require the use of tests).Observations, interactions with the student, his teachers and parents, and other alternative
sources of information may provide valuable information about areas of strength and areas needing improvement that can help
guide the intervention and programming process.Even when standardized assessments
are used, these additional sources should be included in the assessment.

What modifications can psychologists make to accommodate students with
ASD when standardized tests are used?

Examiner: Allow time to meet the student before entering the testing
session. This may help to alleviate some anxiety and will allow you to better assess needed modifications.

Sensory: Consider the students sensory needs when conducting an assessment.
For example, if he finds printed materials too visually stimulating, cover a portion so fewer problems are visible.

Routine: Testing involves a significant disruption in the students school
day. For students on the Autism spectrum, such disruptions can be very distressing. Consider meeting with the student in advance
of the testing session to introduce yourself and to explain the upcoming schedule change. If the student uses a schedule,
work with the teacher to include the testing session on his/her daily itinerary.

Environment: If possible, administer the tests in a familiar environment
for the student. Minimize all distractions. Open window blinds, noisy heating vents, unusual smells, and other environmental
distractions may have a significant impact on the students scores.

Time: When possible, allow extra time for the student to finish items.

Directions: Consider the auditory processing delays of students with
ASD. Standardized directions are often lengthy and confusing. This can be particularly problematic for children with receptive
language difficulties. Make verbal directions as clear and concise as possible. It may be useful to use visual directions
or prompts or to allow the student to respond with gestures or signs.

Motivation: To reduce the number of failures in a testing session, frequently
intersperse new and challenging tasks with easier items. This may require administering items out of the standardized order
or inserting nontest activities within subtests. It may also be helpful to use positive reinforcers to make the testing situation
more motivating for the student.

Behavior: Koegel, Koegel & Smith [1997] suggest assessing whether
the student exhibits certain behavior that may interfere with the testing situation and then using positive reinforcers to
reduce the rate of the interfering behavior. For a student who engaged in the obsessive, self-stimulatory verbal behavior
of speaking in a cartoon-likevoice, Koegel, Koegel and Smith allowed the voice only when responding to test stimuli.

The preceding modifications will likely improve the students performance.
When administration of various intelligence assessments is altered to accommodate for motivation and attention variables,
some students who previously scored in the mentally retarded range with standard administration can score in the average or
low-average range of cognitive functioning (Koegel, Koegel & Smith, 1997).

Employing such strategies will break the standardization of the assessment
took\l, and you cannot generate standard scores. The psychologist will, however, garner much information about the individual
students strengths and areas for improvement information that will be crucial in making effective intervention and programming
decisions.

Written by Stephen M. Edelson, Ph.D.Center for the Study of Autism, Salem, Oregon

There are many types of interventions available today for autistic individuals, including nutritional, biomedical, educational,
sensory, and behavioral. When beginning a new inter-vention, it is important to be as objective as possible to determine whether
the treatment truly helped the person. If the treatment is not helping, then it does not make sense to continue it especially
if it involves a great deal of time, money, or effort.

When deciding to try a new treatment, whether proven or not, here are a few tips to help determine whether the person may
have improved from the specific treatment:

1. When a parent begins to learn about all of the various treatments given
to autistic children, he/she sometimes tries many at once in order to see improvement as soon as possible. However, if the
child improves after receiving several treatments, it will be impossible to determine which one(s) really made a difference.
A general rule is to try a treatment for about two months before beginning a new one, to determine whether or not the treatment
was helpful. However, if it is quite clear that the child improved from a treatment, even after a week or two, then another
treatment can be started.

2. Parents should consider completing the Autism Treatment Evaluation Checklist (ATEC) monthly
for a few months prior to the intervention and then monthly following the intervention. The ATEC was designed specially to
evaluate treatment effectiveness. If improvement occurs due to maturation, then one typically sees gradual improvement over
time. However, if there is a sharp improvement after the intervention is started, then the treatment may be helping. There
is no charge for use of the ATEC. You can complete the checklist on the Internet at: www.autism.com/atec or obtain a hardcopy
of the checklist by writing to the Autism Research Institute (4182 Adams Ave., San Diego, CA 92116; fax: 619-563-6840).

3. If at all possible, tell no one when a child starts a new treatment. This includes teachers, friends, neighbors, and
relatives. If there is a noteworthy change in the child, it is likely that the people who come in contact with the child will
say something about the improvement. It is also a good idea not to ask "Have you noticed any changes in my child?" In this
way, any spontaneous statements regarding the childs improvement will be credible.

4. People who do know that the child received a specific treatment can, independently, compile a list of what changes they
have noticed in the child. After a month or two, you can compare their observations. If similar changes are observed by different
people, then there is a reasonable chance that these changes are real. It is important they these observations be written
down; otherwise, when appropriate behaviors replace inappropriate ones, you may not remember what the childs behavior was
like before the treatment, especially if the behavior was an undesirable one.

5. Parents and others should note in writing when the childs behavior surprises them. Basically, parents usually know how
their child will respond in various situations; and once in a while, their child may do something that is unexpected. If a
child improves soon after an intervention is begun, one can assume that the child will act differently than before; and his/her
behavior will likely lead to more surprises than usual-hopefully good ones!

Some people suggest that parents should give their children only treatments for which there is ample research evidence
to support their effectiveness. However, when a relatively new treatment is introduced, there will likely be a limited amount
of research, if any, on its effectiveness. It takes, on average, 5 to 10 years to complete enough research to support or refute
an interventions efficacy. Additionally, chances are fairly good that even after 10 years, the results will be mixed, because
researchers often use different populations and assess changes using different measures. Be leery of any treatment if it has
been around for ten or more years, and there are no research studies to support its effectiveness. For example, Ritalin is
one of the most frequently prescribed treatments for autism, but we are not aware of any published studies supporting its
effectiveness with this population.

Before trying a new treatment, learn as much as possible about the treatment. Rather than just focusing on positive reports,
it is also important to seek out criticisms of the treatment. When evaluating conflicting claims, look to the nature of the
studies and their methodologies--poorly conducted studies should not be given the same credence as methodologically sound
research.

It is important to keep in mind that no treatment will help everyone with autism. Although one child may have improved
dramatically from a certain treatment, another child, even with similar characteristics, may not benefit from the same treatment.
Careful observation along with a critical perspective will allow parents and others to decide whether or not a treatment is
truly beneficial.

[I would like to thank Dr. Bernard Rimland for his constructive comments on an earlier draft of this article.]

* * * * * * * * * * * * * * * * * * * * * * * * * * * *

This is a speech by a wonderful young man named Martin, a student in 5th grade. He presented this
to his class to better help them understand Asperger's Syndrome.

Fitting In and Speaking Out: Me and Asperger's Syndrome

by Martin

Hello. I am Martin, of Ms. L's 5th grade class. Those of you who have been around me a lot have
noticed that sometimes I act like I'm from another planet.

I may flap my hands, or not look at you when I talk, or
not understand your hints or body language. Things you think are nothing may really upset me, and things you can ignore may
distract me from the job at hand. I have trouble following a long string of instructions, but I can get so involved in a book
that I don't realize I'm in a room full of active, noisy people. I seem uncoordinated or clumsy, yet I can talk forever about
computers and video games.

During the past 6 years, some of you may have asked me why I do these things. I usually
answered, "Don't ask", or "Ask my Mom". I didn't want to tell you the truth because I was afraid you'd misunderstand. But
now I'm ready to explain, and I think you're ready to listen.

I have an abnormality in my brain called Asperger's
Syndrome, which is a form of autism. No, I'm not crazy or retarded: My brain functions on a high level, just differently than
yours. My senses work, but the information they sent to my brain can get misfiled, or come in on the wrong pathways. (Can
you imagine "hearing" bright sunlight?). Sometimes, all the info from all my senses hits my brain all at once like a million
radio stations playing at the same time, and I don't know how to filter out the junk and pay attention to what's important.

This gives me advantages and disadvantages. On the good side, I can be unbelievably smart at some things, like remembering
different computer codes, or remembering dates and facts and trivia, or having different formulas for getting the right answers
to math problems. I can read technical books written for adults, and "talk shop" with people at Dad's computer lab at work,
sometimes even helping them solve programming problems.

On the bad side, I am prone to asthma, allergies, and thyroid
problems. My muscles aren't strong or coordinated, I have trouble working in groups, and bullies use me as an easy target.
I can't keep my desk and folders organized, I really hate being outdoors, and certain clothes just don't feel right and bug
me to death. And sometimes, I just get overloaded and need to get away for a few minutes to find my center again.

I'm
not asking you to feel sorry for me. Because if you pity me, you are also pitying all the great people like me, for example:
Thomas Edison, Alexander Graham Bell, and Shatoshi Tijjaru (creator of Pokemon) who all have autistic traits.

We're
not looking for a cure for Asperger's; just your understanding, and the understanding that comes from research. After all,
if autism was cured, society would lose access to many of its great geniuses and inventors. We need you to accept us and be
friends with us, while we learn to survive and be successful in your world.

I know there are lots of kids in our school
with different levels of autism who are very lonely, and afraid of being made fun of. And I know you'll meet more autistics
in middle school and beyond.

I'm asking you, in the future, to be more tolerant of autistic kids. Autism is a disability,
like bad eyesight or deafness. And who knows? The person you are friends with in school may end up discovering an anti-gravity
energy source, or develop the first physical-object transporter, like on Star Trek, or solve the world's hunger problem. Or,
more likely, help you with trig or physics in high school!

Please take time at home to read the folder I'm giving
out today. You'll be surprised who's on the list of famous people with Asperger's Syndrome! See if you can find Mark Twain
and Jim Henson's names, and think about anyone else you can add to the list. (This list is incomplete, and being added to
every day).

Finally, to the students and teachers here at Meadowland who took the time to care and be my friend, I
end by saying "Thank you".

TWENTY years ago I was teaching a class to estimate length to the nearest
centimetre and measure to check their answers. Jake was nearly in tears because all his answers were wrong... by one or two
millimetres! Later, in a spelling lesson, I livened it up with "naughty" words that broke the phonic rules. Jake was inconsolable.
Words that broke the rules? How could that be?

I moved on to teach in a special school and forgot all about Jake.
Then five years ago it was suggested that my ten year old son might have autism. I knew he was a perfectionist who took things
literally, was obsessed with rules and prone to tantrums. But autism? I had taught children with autism. Many could not speak.
They flapped and rocked. They showed scant regard for other people. Matthew was too bright, too sociable to be autistic. Or
so I thought. I remembered Jake.

I started to read and discovered that these children have only recently been recognised.
Now we have a name for their condition: Asperger's syndrome.

Autism was once thought rare, affecting fewer than five
in 10,000. Those diagnosed usually had such severe problems that they needed specialist care and education. Today the National
Autistic Society estimates that in the UK some 500,000 are affected, most of whom lie within the normal range of abilities
and attend mainstream schools.

This broad range is best thought of as a spectrum. Classical autism, sometimes referred
to as Kanner's autism after the psychiatrist who first described it in 1943, is at one end. At the other is Asperger's. Hans
Asperger was a paediatrician who wrote about autism. His work did not achieve international recognition until after his death
in 1980. Children with Asperger's syndrome are usually quite able and articulate but, like all children on the autistic spectrum,
they share the triad of impairments.

1. Impairment in the social uses of language.

Children with Asperger's
struggle with the everyday use of language. Their tendency to take things literally leads them to misunderstand jokes and
slang. They can be very precise to the point of pedantry when answering questions but struggle to hold a conversation. As
one young man described it, "I learned to speak before I learned to communicate."

2. Impairment in social understanding

The child with classical autism does not understand social interaction and often appears withdrawn. With Asperger's
the child tries to understand and is often outward going and social in intent. But their social naivety leads to all sort
of misunderstandings and they can make themselves very unpopular without understanding why.

3. Impairment of imagination

We all try to make sense of our world. This drive to create coherence often involves a leap of the imagination that
is difficult for children with autism. They struggle to predict what might happen next or cope with novel situations on the
basis of past experience. They rely instead on routines which may become elevated to the status of rituals that must be followed
to the smallest detail. Overwhelmed by the extent of human knowledge, children with Asperger's often concentrate on a special
interest which can dominate their lives to the exclusion of other activities.

Our education system is not geared to
children with Asperger's. It is a neurological disorder, not a temporary psychological disturbance. People with Asperger's
have brains that are differently wired. Experiments have shown that they use logic centres in the brain to work out daily
life problems that we cope with automatically, using our social instinct.

They may become so good at using intelligence
to compensate for their lack of social instinct that we may not notice. But life will always be a balancing act requiring
immense concentration. It can be like permanently living on the edge of a nervous breakdown; the smallest thing can tip them
over the edge and lead to rage or uncontrollable panic attacks.

You cannot use the remedial model to fix autism and
then take the support away any more than you can give a pupil glasses then take them away because he can see. You have to
accommodate their autism if these children are to experience real inclusion.

This is easier said than done. The culture
of league tables and payment by results militates against creating an autism-friendly culture. The Secretary of State says
he favours inclusion, but inclusion turns to exclusion if you insist on fitting square pegs into round holes instead of shaping
the hole to the peg.

That is why many parents of children with Asperger's choose to home educate. Even when they have
favorable experiences in primary schools the transition to secondary education, coinciding as it does with the trauma of adolescence,
proves too much for many children. My own son became school phobic and only managed three terms in his first three years at
secondary school.

Teachers are under enough pressure. I do not want to add to their burden. There are things we can
do, however, to make life easier for our autistic pupils and ourselves:

a) Able students with autism need a lot of
support in mainstream schools. The effects of their autism may be subtle but they are far reaching. My own son found all tests
traumatic. We told him not to worry, just try his best. To Matthew, best meant 100 per cent. In trying to help we had made
things worse.

People with Asperger's often experience problems with understanding verbal instructions. Repeating yourself
only adds to the sensory overload they feel. Sending home written briefs for homework and assignments would do much to
ease these problems.

b) Their biggest problem at school is bullying. They may not even cope with normal peer group
interactions without support.

Traditionally, support is classroom based, but they are most vulnerable in corridors
and playgrounds. My own son suffered taunts of "psycho" and "schiz". He would be jostled or patted on the head. Girls would
flirt with him. If he responded he was cruelly rebuffed. If he ignored them he became "gay boy".

This is an equal
opportunities issue. Children with Asperger's cannot hide their disability. Nor should they have to. A pupil in a wheelchair
is afforded protection and other pupils made aware of their rights. All too often the person with Asperger's is expected to
adjust their behaviour to pre-empt the bullying. We blame the victim.

3) Another problem is our attitude. We should
try and understand the world from the pupil's point of view. They may come across as being disruptive or lazy when in fact
they are struggling to cope with our failure to understand. Too often the pupil expresses a problem and our response is: "Try
to be less autistic and the problem will go away."

Because children with Asperger's tend to be logical thinkers, it
is tempting to try logic to argue them out of their autism. I know - I have been there with my son. Believe me it does not
work like that! If it did we would have cured Asperger's syndrome by now.

Are there any reasons to be cheerful? Well,
we parents of children with Asperger's know our stuff and want to help. Sometimes we are dismissed as being fussy or over
protective. One reason I wrote my book ("Learning to Live With High Functioning Autism: a parent's guide for professionals")
was so that professionals would listen to me. It worked! I wish they had listened three years ago when Matthew was housebound
by fear. Childhood should not be a time of fear.

And all the time there is the pressure to conform from people who
think they know best. But learning to live with autism is a two way street. We have a lot to learn from people with Asperger's.
As Matthew once said: "My teachers think they know more about autism than me because they have been on a course. But I have
been autistic all my life!"

************************************************************

Asperger Syndrome by Rosalyn Lord

Asperger Syndrome
is a developmental disorder falling within the autistic spectrum affecting two-way social interaction, verbal and non-verbal
communication and a reluctance to accept change, inflexibility of thought and to have all absorbing narrow areas of interest.

Individuals are usually extremely good on rote memory skills (facts, figures, dates, times etc.) Many excel in maths
and science. There is a range of severity of symptoms within the syndrome, the very mildly affected child often goes undiagnosed
and may just appear odd or eccentric.

Whilst Asperger Syndrome is much more common than Autism it is still a rare
condition and few people, including professionals, will know about it much less have experience of it. It seems to affect
more boys than girls. In general terms they find making friends difficult, not understanding the subtle clues needed to do
so. They often use language in a slightly odd way and take literal meanings from what is read or heard. They are happiest
with routines and a structured environment, finding it difficult to decide what to do they fall back on to their preferred
activities. They love praise, winning and being first, but find loosing, imperfection and criticism very difficult to take.
Bad behaviour often stems from an inability to communicate their frustrations and anxieties. They need love, tenderness, care,
patience and understanding. Within this framework they seem to flourish.

Children with Asperger Syndrome are for the
most part bright, happy and loving children. If we can help break through to their 'own little world' we can help them to
cope a little better in society. They have a need to finish tasks they have started. Strategies can be developed to reduce
the stress they experience at such times. Warnings that an activity is to finish in x minutes can help with older children.
With younger children attempts to 'save' the task help - videoing a programme, mark in a book etc.,.

As the children
mature some problems will get easier, but like all other children new problems will emerge. Some teenagers can feel the lack
of friendships difficult to cope with as they try hard to make friends in their own way but find it hard to keep them. This
is not always the case, many have friends who act as 'buddies' for long periods of time. Social skills will have to be taught
in an effort for them to find a place in the world ... so take all opportunities to explain situations time and time again.....
and one day.......it may work!

Please bear in mind that booklets such as this do tend to detail all the problems which
can be found within a syndrome but that does not mean every child will have all of them. Each child will also have different
levels of achievements and difficulties. They are after all just as the others ... individuals !

Is Asperger Syndrome
The Same As Autism?

The debate on this question still continues, some experts say that Asperger Syndrome should be
classified separately, others argue that the core difficulties are the same, only the degree to which they are seen in the
children actually makes the difference. One expert - Uta Frith - has referred to Asperger children as 'Having a dash of Autism'.

Autism is often interpreted as a withdrawal from normal life - to live in the persons own fantasy world. This is no
longer the real meaning of Autism. The severity of the impairments is much greater than in Asperger Syndrome, and often the
child will have little or no language. Learning problems are more common in classic Autism. In Asperger Syndrome speech is
usual and intelligence (cognitive ability) is usually average or even above average.

For the moment it is taken that
the similarities are enough for both Autism and Asperger Syndrome to be considered within the same 'spectrum' of developmental
disorders. Whilst a clear diagnosis is essential, it can change through life. The autistic traits seen in young children can
often seem less severe as the child matures and learns strategies to cope with his/her difficulties.

Children with Asperger
Syndrome have poor social skills. They can not read the social cues and, therefore, they don't give the right social and emotional
responses. They can lack the desire to share information and experiences with others. These problems are less noticeable with
parents and adults, but it leads to an inability to make age appropriate friends. This in turn can lead to frustration and
subsequent behaviour problems. They find the world a confusing place. They are often alone; some are happy like this, others
are not. They are more noticeably different among peer groups in unstructured settings i.e. playgrounds. Their naivete can
cause them to be bullied and teased unless care is taken by assistants or buddies to integrate and help protect them. They
can often focus on small details and fail to see the overall picture of what is happening in any situation.

COMMUNICATION

Both verbal and non-verbal communications pose problems. Spoken language is often not entirely understood, so it should
be kept simple, to a level they can understand. Take care to be precise. Metaphors (non-literal expressions -'food for thought')
and similes (figures of speech - 'as fit as a fiddle') have to be explained as children with Asperger Syndrome tend to make
literal and concrete interpretations. Language acquisition - learning to speak - in some cases can be delayed. They make much
use of phrases they have memorised, although they may not be used in the right context. A certain amount of translation may
be needed in order to understand what they are trying to say.

Spoken language can sometimes be odd; perhaps they don't
have the local accent or they are too loud for a situation or overly formal or speak in a monotonous tone. If the child with
Asperger Syndrome has a good level of spoken language you must not assume their understanding is at the same level. Some talk
incessantly (hyperverbal) often on a topic of interest only to themselves without knowing the boredom of the listener.

Difficulties
in using the right words or forming conversations is part of semantic-pragmatic difficulties. They appear often to talk 'at'
rather than 'to' you, giving information rather that holding proper conversations. Body language and facial expressions of
a child with Asperger Syndrome can appear odd (stiff eye gaze rather than eye contact) and find 'reading' these things in
others gives rise to further difficulties. Reading at an early age is known as Hyperlexia. Some children have remarkable reading
abilities although you should check to see if they also understand the text.

NARROW INTERESTS/PREOCCUPATIONS

One
of the hallmarks of Asperger Syndrome is the child's preoccupation (or obsession) with certain topics, often on themes of
transport - trains in particular-or computers, dinosaurs, maps etc. These preoccupations, usually in intellectual areas, change
over time but not in intensity, and maybe pursued to the exclusion of other activities.

REPETITIVE ROUTINES, RITUALS,
INFLEXIBILITY

Children often impose rigid routine on themselves and those around them, from how they want things done,
to what they will eat etc. It can be very frustrating for all concerned. Routines will change from time to time; as they mature
they are perhaps a little easier to reason with. This inflexibility shows itself in other ways too, giving rise to difficulties
with imaginative and creative thinking. The child tends to like the same old thing done in the same old way over and over
again. They often can't see the point of a story or the connection between starting a task and what will be the result. They
usually excel at rote memory - learning information without understanding, but it can still be an asset. Attempts should always
be made to explain everything in a way they can understand. Don't assume because they parrot information back that they know
what they are talking about.

EDUCATION

If the child with Asperger Syndrome is to be educated in a mainstream
school it is important that the correct amount of support is made available. In order to get the correct support a Statement
of Special Educational Needs should be drawn up from the various advice supplied by you and the specialists. This procedure,
when it begins, can take 6 months and be a very stressful and confusing time - don't be afraid to contact people who can help;
this need not be a professional it may just be someone who has done it all before.

It is beneficial if the school
of your choice is willing to learn about the difficulties that they and the child will face, some schools are better than
other on this score. Looking at several schools will give a better picture of exactly what is available. The support currently
offered in mainstream schools is by Special Support Assistants (SSA) for a certain number of hours each week based on the
child's needs in order to help the child access the curriculum and develop in a social setting. A support teacher with specialist
knowledge of Autism should support the child, SSA, teacher and school in understanding and teaching the child. Other professional
input may also be required such as speech and language therapy to help develop skills.

The home/school link is vital,
a diary can prove invaluable giving two way communication on achievements and problems on a regular basis.

HELPFUL
STRATEGIES

There are many things you can do to help your child better understand the world and in doing so make everyone's
lives a little easier. The ideas below are only suggestions which you may or may not find helpful.

Keep all your speech
simple - to a level they understand. Keep instructions simple ... for complicated jobs use lists or pictures. Try to get confirmation
that they understand what you are talking about/or asking - don't rely on a stock yes or no. Explain why they should look
at you when you speak to them.... encourage them, give lots of praise for any achievement - especially when they use a social
skill without prompting. In some young children who appear not to listen - the act of 'singing' your words can have a beneficial
effect. Limit any choices to two or three items. Limit their 'special interest' time to set amounts of time each day if you
can.

Use turn taking activities as much as possible, not only in games but at home too.

Pre-warn them of any
changes, and give warning prompts if you want them to finish a task... 'when you have coloured that in we are going shopping'.
Try to build in some flexibility in their routine, if they learn early that things do change and often without warning - it
can help. Don't always expect them to 'act their age'; they are usually immature and you should make some allowances for this.

Try to identify stress triggers - avoid them if possible -be ready to distract with some alternative 'come and see
this...' etc.

Find a way of coping with behaviour problems - perhaps trying to ignore it if it's not too bad or hugging
sometimes can help.

Promises and threats you make will have to be kept - so try not to make them too lightly.

Teach
them some strategies for coping - telling people who are teasing perhaps to 'go away' or to breathe deeply and count to 20
if they feel the urge to cry in public.

Begin early to teach the difference between private and public places and
actions, so that they can develop ways of coping with more complex social rules later in life.

Let them know that
you love them - wart's an' all' - and that you are proud of them. It can be very easy with a child who rarely speaks not to
tell them all the things you feel inside.

Remember, they are children just like the rest, they have their own personalities,
abilities, likes and dislikes - they just need extra support, patience and understanding from everyone around them.

Rosalyn
Lord is a parent of a child with Asperger Syndrome, living in the U.K.

Tito, aged 13, is from India, and although severely affected by autism
and nearly non-verbal, he communicates eloquently through his writing. With the help and determination of his mother Soma,
Tito has learned to communicate both by writing letters wit``h a pencil, and by typing them on a computer keyboard.

This interview took place at the recent Innovative Technologies for
Autism Conference at the Stanford Research Center in Menlo Park, California, where Tito and his mother were presenters. Tito
answered some questions by writing words one letter at a time on paper while Soma verbalized them, and others by typing letters
on a computer keyboard.

Q:Soma, how did he learn to spell?

Soma: It started with the numbers on a calendar. Then pointing to
letters on a board. Then spelling simple words.

Q: How did you learn to write, Tito?

Tito: I had to practice and it was slow.

Q: Can you read? Or is all your communication through hearing?

Tito: I try to read but I hear and understand better.

Q: How did you become connected with Cure Autism Now?

Soma: Portia (Iversen) learned about us from a doctor who she met
at a conference, and she invited us from India last year for the Innovative Technologies for Autism Conference. We've been
connected since then.

Q: And I believe you've been traveling in the US this year to meet
scientists working on autism. How was that?

Tito: It is a very good time I am having because I am taking it very
seriously.

Q: What would you like to say to other parents of children with
autism?

Soma: Autism is not a disaster. It's nothing scary. Allow people with
autism to be as they are, not slapping the hand as if it's something bad. They need their space and they need their dignity.
So work on the good side. I do. I am working with some children here now, and I'm so excited about it. I never realized I
would have this opportunity.

Q: Tito, I read your book of poems, and as a writer myself I was
very moved by your work.

Tito: Will you find a publisher? I am very ambitious.

Soma: The National Autistic Society published his poems. But Tito
wants to become a professional writer. He wrote a piece called Mindtree - suppose a tree has a mind, what would it think?
What would it say? It may wish to move around, but it can't.

Tito: I like the language of English and wish to study it.

Q: What would you say to parents and children who don't have a
voice like Tito?

Soma: That doesn't mean they are limited in language. Tito uses very
little of audible speech, but he can communicate.

Q: What would you say to parents concerned about their children's
hands flapping.

Soma: Let them flap. So what?

Tito: Why don't you do it!?

Soma: It's nothing to be ashamed of. Why should you stop them? Let
people think what they like! They need to do that. It's important for them.

This is an article well worth reading about invisible disAbilities
in the education system.

Source url: http://www.newhorizons.org/spneeds_nowak1.html

Pain, Waste, and
the Hope for a Better Future..."Invisible Disabilities" in the Educational System By: Margi Nowak, PhD

A few
years ago, when my then pre-teen son and I went to Olympia to learn how to advocate for people with disabilities at one of
the Advocacy Day Wednesdays held during the legislative session, I met a woman whose attempt to triumph over inexpressible
pain stunned me to the point of mute but profound admiration. She was one of the people who acted as "lunchtime mentors" to
those of us who had come for the day to introduce ourselves individually to our state representatives, and she was also the
mother of a son who had died of Niemann-Pick Type C -- a hideously relentless neurological disease that inexorably kills male
children who begin developing normally and then slowly lose all functions, inevitably deteriorating and dying before their
teen years are over. Truly, this woman knew a kind of parental pain that the rest of us hope never to experience, let alone
understand -- a pain which might be seen as being at the extreme end of a continuum embracing all manner of disabilities ranging
from those that guarantee acute physical suffering and premature death, to those which are virtually invisible. Deeply grateful
for my experiential ignorance of the former kind of disability affecting a child of mine, I am, however, very familiar with
the latter kind of pain: being the mother of a child whose disability is hidden rather than obvious.

In extended family
gatherings, in the classroom, in informal groups among age-peers, and in society in general, such children may at first glance
appear to be "just like everyone else", for they use no wheelchairs, have no feeding tubes, and show no physical signs of
pathology. But make no mistake about it: invisible neurological disabilities -- particularly those which give rise to behavior
patterns that differ from the expected norm in ways that bring forth negative judgments about child and parents alike -- can
indeed cause tremendous emotional pain for such children and their parents too.

As a member of an international on-line
community focusing on one such disability, I have four years' experience reading the stories shared on a private listserv
by hundreds of other parents as well as adults who themselves have the same neurological condition. I have also participated
actively in a Washington State support group for people affected by another neurological condition, and I regularly read an
online support newsgroup related to this disability too. In addition, I am also a cultural anthropologist and an educator
who has created a course on disability at my university. My observations concerning the situation of children with invisible
disabilities within the educational system are thus filtered through several different but complementary lenses: emotionally
involved parent, theoretically informed researcher, pragmatically interested professor. No matter which way I look at the
situation, however, my conclusion is the same: for such students and their families, the educational system is the site of
far too much needless pain even as it wastes far too much human potential.

At the root of this unnecessary suffering
and waste, I believe, is not simply "the bureaucracy", with all its entrenched, inflexible, and even Dilbert-like propensity
to make positive and creative systemic (as opposed to incidental) change well-nigh impossible when proposed by relatively
powerless people from "the bottom" of the system. In addition to this structural tendency for systems -- however terrible
they might be for some individuals -- to stay basically the same as a whole, I believe there is also a corresponding ideological
reason for this state of affairs. At issue here is the underlying question of expertise. The determination of what is "true"
or "acceptable" or "best" in a particular social (or educational) system is typically made, in the end, by those with the
power to make the determination "stick". In the words of a phrase suggested by Michel Foucault, these "regimes of truth" thus
operate in an inherently circular manner, with the "legitimate knowledge" of the gatekeepers and decision-makers depending
for its legitimacy on the assent of those whose "legitimate" expertise has put them into positions of power in the first place.

How does this translate into the real lives of students with invisible disabilities? Typically, it involves what their
parents see as an almost unwinnable (even if not formally declared) battle between two competing camps of "experts": the bureaucratically
and hierarchically organized school system, fighting to break even if not win a numbers game against the scarce resources
and limitations of budget, space, personnel, technology, training, and even taxpayers' good or ill will toward public education,
versus the comparatively tiny, desperately pieced together, much less "legitimate" circle of people who, for reasons of love,
commitment, and sometimes money (for those families who can afford it), act as advocates for such a student.

The very
first "campaign" of such a battle -- getting the child officially recognized as having a disability requiring special accommodations
-- can confront the parents with an even more painful shock than the one they had to face when they initially recognized and
acknowledged that indeed their child is "not normal". In the vast majority of cases, students with hidden disabilities are
not labeled as such in their infancy. Rather, parents have to absorb, little by little, the painful fact that their child
is undeniably "different" from other children in the family, neighborhood, day care center, play group, or preschool -- and
that this difference is causing their child to be left out, humiliated, taken advantage of, and above all, negatively judged
by children and adults alike. As difficult as it might be for parents to accept this reality and then try to move on and help
their child navigate through life, if the disability in question happens to be one not well known by the general medical and
educational community, the parents then have to face the second painful shock: doctors and educators typically do not appreciate
being told by "mere parents" that their label for their child's difference (e.g. "behavior problem", or "attentional difficulties")
is wrong or incomplete, and that "something else" is going on with this particular child.

In fact, "getting the proper
label" can occupy years of the child's early educational career. To illustrate with one particular disability, Asperger Syndrome
(a variant of high-functioning autism) is a neurobiological condition marked by, among other characteristics, serious social
skill deficiencies, especially with age-peers. It is often accompanied by moderate to severe executive dysfunction -- that
is, the individual can have enormous (and in some cases irremediable) difficulties planning, initiating, organizing, prioritizing,
and completing required tasks. At the same time, however, many children with AS are highly verbal, especially with adults,
and another characteristic of the disorder -- fascination with, and astonishing expertise concerning, a "special area of interest"
(e.g. dinosaurs, sports statistics, trains, sharks, carnivorous plants) -- makes them seem, in their early educational years
at any rate, like "little professors", hardly needing remedial academic attention.

And so, the stage is set: the parents,
hearing the child come home from school day after day with tales of woe, especially from the "nightmare" periods of the school
day for such a child -- recess and lunch -- see their child as having enormous needs for help and special consideration, while
the teachers and other school personnel, seeing the same child reading considerably above grade level, often determine that
the real problem here is an overprotective mother who refuses to allow her child to face the consequences of his inappropriate
and blameworthy behavior.

In the meantime,the child, who, because of his "weirdness" in his peers' eyes, will inevitably
have attracted the attention of "predator" types of students, will find himself set up again and again as "prey". This is
the child who is the perfect "victim" for set-ups. His neurological wiring is very likely to make him hypersensitive to stimuli
involving sounds and touch as well as to obsessive-compulsive "mental looping" over perceived injustices. A soft, insistently
repeated noise, inaudible to the teacher but calculated to "unnerve the nerd", a tiny, personally meaningful object such as
a special pencil, taken and "only borrowed" from such a student, a quick poke here, a "misplaced" lunch there -- and the "weird
kid" can be counted upon to explode in what to the predators is a highly entertaining display of socially inappropriate, clumsily
expressed rage.

Eventually, after such a student accumulates sufficient battle scars from such episodes, and attracts
sufficient negative attention from teachers for "not turning in work", his parents' first campaign in their battle to secure
some sort of accommodations for their child will be over: he will very likely become a "focus of concern". But the official,
bureaucratically bestowed label he will probably receive at first is not likely to result in a placement or system of accommodations
that special education or 504 law so ideally seems to promise. Instead, such a student will typically be squeezed into whatever
existing places and services his school already provides for "kids with problems", and he is all too likely to be labeled
as qualifying for these services on the basis of having some "other health impairment" such as severe behavior disorder (SBD),
oppositional defiant disorder (ODD), or attention deficit disorder (ADD).

Such a label, typically involving at least
partial-day placement in a "learning resource room" (LRC) will then, because of limitations of space and personnel, typically
put the student in what one researcher of Asperger Syndrome has called "the worst possible environment for this type of child".

What this individual so desperately needs is constant, supportive, guided exposure to the very best peer-age role
models in the school building, and what he often gets instead is a segregated experience with special-needs students whose
different issues and problems make them the very last people on the planet likely to tolerate, much less nurture, the "Forrest
Gumps" of the world.

If this all-too-typical train of events is not already depressing enough, it is, in addition,
highly likely that at least some of the students with hidden disabilities such as Asperger Syndrome may also be gifted (even
though their work output may still be "substandard" according to "normal" criteria such as grade averages). Here the personal
tragedy of "wrong placement" is compounded by a sad and sorry waste: neither the student nor society in general is ever likely
to benefit from what could be exceptional intellectual or artistic abilities. Instead, in these sorts of cases such talents
will appear merely as quirky flashes of odd genius, garnering for their holder none of the specialized and sustained guidance
needed for these gifts to develop to their full potential. All too often, school systems justify their refusal to let such
students gain entry to special programs for the gifted and talented by citing the "normal" requirements, forgetting or ignoring
the fact that for these students, life is never going to be "normal". Furthermore, what the gatekeepers often confuse in such
situations is the difference between exceptional abilities and the "normal" display of these qualifications. Some disabilities,
particularly those that involve executive dysfunction, mean that for the person's entire lifetime, his or her ability to meet
certain standards of achievement is always going to be compromised. How sad for the school system to use one or several of
the symptoms of an invisible disability -- which is emotionally painful enough as it is -- as justification for exclusion
from what could otherwise, if done right, be a genuine avenue for success.

Even without the issue of giftedness complicating
the situation of students with hidden disabilities, the problem of securing the "proper fit" between student and program typically
involves endless and exhausting negotiations between home and school. While perceptive and caring individual teachers may,
here and there throughout a particular student's career, make a tremendous difference in one or another classes such a student
may take, the educational system as a whole is woefully unable to maximize the potential of all the "square pegs" who just
cannot be made to fit into "round holes".

Privately, among themselves, many parents of children with such disabilities
have often had furtive thoughts of wishing for a temporary switch: "Just for a few days, let them see my child in the body
of a Stephen Hawking. Perhaps then maybe they'll notice that not all brain impairment equals intellectual impairment, and
also, perhaps -- God forbid -- if my child looked so disabled, perhaps then we could then finally stop fighting to get appropriate
services".

As more than one such parent has further observed, the prevailing wisdom among the battle-weary is that
the decision-makers in educational system all too often wait for the child to fail (or the parents to threaten to take legal
action) before finally deciding to allocate funds and resources to provide more appropriate accommodations. And, in line with
the observation that educational bureaucracies operate as "regimes of truth" (with the legitimacy of the gate-keepers' power
determined by the very same criteria of expertise that determine who gets to wield that power), the school system also controls
the definition of what it means to "fail". A student whose disability severely impacts his ability to hand in homework "normally",
but who is bright enough to pass standardized exit tests, will probably manage to squeak by and pass most of his required
courses. And that student's parents, who fear, with every fiber of their being, that their child's eventual high school diploma
will guarantee him virtually no viable future after they are dead, may plead and plead that the "failure" is taking place
right now, but since their expertise as parents is structurally positioned at the bottom of the chain of decision-makers,
their concerns and ideas have no effect on comprehensive, long-rang policy decisions.

Instead, such parents are "cooled
out" by district-level administrators who listen but who are "tone-deaf" to hear, and worn down by the sheer number of steps
required to secure the genuinely appropriate, system-wide (rather than haphazard and piecemeal) set of accommodations that
would make all the difference for their child.

This is not what the law either intends or even permits. Section 504
as well as IEP law both provide ample legal grounds for the creation of truly individualized educational programs for students
with disabilities, but if the disability in question happens to be one that is not familiar to school staff and administrators,
and/or if the parents request accommodations that have never been heard of let alone tried before, the chances are almost
certain that the only accommodations the child in question will have received by the time he or she exits the supposedly "free,
appropriate public education" system will have been a patchwork of cobbled-together partial adjustments that have had to be
hammered out anew every September, with each new year's slate of teachers taking at least three months to even begin to realize
the extent of the disability's impact on educational performance. And when the vast majority of these teachers are indeed
caring, capable educators, who often would help provide more appropriate accommodations -- if they had proper support from
higher up the chain of command -- the waste of potential here is even more tragic.

A sadly perfect illustration of
this tragedy (insightful planning, worthy intentions, and hard work never finding their mark) is the contrast between the
wonderfully well-done IEP and 504-related material posted on the OSPI website -- in particular, the 67-page online brochure
entitled "Ladders to Success: A Student's Guide to School After High School" http://www.k12.wa.us/specialed/transition/ladders.pdf.
This is an Acrobat Reader file and it normally takes a long time to load.) -- and the shocking lack of mention if not awareness
on the part of high school educational and administrative staff that this document (and more important, the impulse behind
it) even exists. "Transition services" for special-needs high school students may be promised by law and described in hope-affirming
words in official documents, but "in the trenches" no one seems to know much about this phrase, let alone how to implement
it appropriately, when the student in question is not "seriously" or "obviously": disabled. Perhaps some gatekeepers to these
kinds of services believe that preparing "these kinds" of special-needs students for a college and post-college career is
an exercise in delusional thinking, but personal biographical stories shared in online support groups by bright, articulate
adult "survivors" who have precisely these kinds of disabilities (invisible conditions that resulted in their being judged
"incompetent"" and "lazy" themselves throughout their early school years) reveal the possibility of far more hopeful post-high
school outcomes.

What would it take for these "hopeful outcomes" to become more of a reality? How could the pain and
waste that is currently so operative in the lives of students with little-known, invisible disabilities be ameliorated?

Three
related suggestions come immediately to mind:

All teachers and administrators (rather than only special-education
experts) need more adequate training for dealing with the special needs of students with disabilities who are increasingly
populating regular education classes. Clearly it is not possible for all teachers to be instructed in advance concerning all
possible disabilities, but there needs to be a system-wide network of support for school personnel, beginning with an efficient,
administratively-sanctioned "delivery system" of information, custom-tailored to address the particular strengths and weaknesses
of each individual student identified as having special needs. Many parents try mightily to educate their child's teachers
by filling their school mailboxes with relevant information gleaned from excellent, up-to-date Internet websites devoted to
the disability in question, but with no legitimization given to this material "from the top of the bureaucracy", overworked
teachers are likely to merely file these pages away for "future" reference.

Another key role for this administratively-sanctioned
"information delivery system" could also be that of working to close the knowledge gaps that exist between those (typically,
parents and advocates) who know what education law intends and promises, and those (typically, school personnel) who may actually
be less knowledgeable in this respect, but who still control access to services.

Distinct from the special-education
department in each school, and integrated within the entire complex of school programs, facilities, buildings, and personnel,
there should be a permanent, daily, clearly recognized person, place and position (perhaps filled by social workers) to serve
as an immediately-available resource for students whose special needs are likely to involve them in social misunderstandings
and conflicts with others in the school. Such a person would be trained to serve as the student's advocate vis-à-vis teachers
and students who do not understand the effect of the student's disability, and the room itself would serve as a "safe haven"
for, among other things, the student's self-initiated removal from potentially explosive situations. "Parting out" such services
("If you're in a crisis situation on a Tuesday morning, go to the guidance counselor; if she's busy, wait for the assistant
principal or make an appointment to see the school psychologist next week") engenders a feeling of wandering hopelessness
for the student, which can quickly cancel out any previously-made gains in self-reliance and trust in others.

Legitimate
recognition should be given to the hard-won expertise of parents regarding the complexities of their special-needs child.
Of course professionally trained teachers and administrators have vastly more collective and pedagogical experience with thousands
of students "who are not like this one", but the parents of a special-needs child have infinitely more experiential wisdom
about what is likely to "work" or "cause more problems" with precisely "this one". While special education law is very clear
about the crucial importance of incorporating parental input into such students' educational plans, the social and political
realities of the status contestations and insecurities displayed at parent-teacher meetings greatly compromise the good intent
of the law. What is important to recognize in the end, however, is that regardless if the parent is a suit-clad professional
or a single mother who comes trembling to school meetings wearing sweat pants and an attitude, she, more than anyone else
in that meeting room, is most likely to be locked on to the most important target of all underlying her child's education:
providing the best possible answer to the question "What will happen to him when I'm no longer here?" All other educational
goals and objectives pale in comparison to the need to address and continually keep in mind this absolutely fundamental priority.

For parents of children with disabilities, it is this question more than any other, which motivates them to keep persisting,
through all the inevitable as well as sadly unnecessary pain and waste of potential, to fight for a better future.

Although this specifies it's for Grandparents,
I think this wonderful article will be of help to anyone trying to better understand the Asperger's child in their life.

Especially
for Grandparents of Children With Asperger Syndrome By Nancy Mucklow

If your grandchild has been newly diagnosed,
then welcome to the world of Asperger Syndrome. It is a mysterious and sometimes overwhelming world, but it is not one to
be afraid of. Even if you are saddened, disappointed or angry about the diagnosis, keep in mind that its for the best. The
earlier the diagnosis, the earlier the intervention, and the better the prognosis in the long run.

For some grandparents,
the news seems to come right out of the blue. Sure, there were difficulties at school - but then, school isnt as strict as
it used to be. And yes, there were some problems at home, but none of them sounded like anything that good old-fashioned discipline
couldnt solve. Why, then, do the parents seem to be clinging to this diagnosis as if it were a life-raft in the high seas?
And why are counsellors, psychologists, occupational therapists and special education teachers suddenly getting involved?

Is this child really so different?

As grandparents, you have a lot of questions to sort out. But along with
the confusion comes an opportunity to get involved where you are really needed. Children with Asperger Syndrome have a special
need in their lives for safe people who won't criticize them or put them down for their differences. They need loving, non-judgmental
grandparents who accept them as they are and make a place for them in their lives. If you can reach out to them, they will
treasure your relationship with them for the rest of their lives.

I'VE READ ARTICLES ABOUT ASPERGER SYNDROME, BUT
I STILL DON'T UNDERSTAND WHAT IT IS.

Asperger Syndrome is a type of autism, and autism is a neurological disorder
that affects the way a person interacts with others and his or her world. Its not a mental illness, and it is not caused by
weak parenting. In its more severe forms, its a disorder because it causes disorder in the life of the child. In its milder
forms, it is more of a marked difference from the norm. In our culture, which judges people on the way they interact with
others, these disorder-differences can have a profound impact on a persons life.

You've probably heard the parents
complaining about the difficulties theyve had with the child in the home - obsessive behavior, irrational outbursts, wild
fears, and irritability over the smallest issues. These problems are not misbehaviors, but rather the childs responses to
an inability to comprehend what is going on around them and inside them. Some experts have called it a mind blindness, one
that causes the person to stumble and bump into complex social situations that they can't see. Yet by effectively blinding
the mind to certain aspects of daily life, Asperger Syndrome enables the childs mind to focus in a way that most of us are
incapable of. They feel their feelings more intensely, experience texture, temperature and taste more powerfully, and think
their thoughts more single-mindedly. In many ways, this ability to focus is the great gift of Asperger Syndrome, and is the
reason why a great number people with Asperger Syndrome have become gifted scientists, artists and musicians.

It is
as if the Asperger brain is born speaking a different language. It can learn our language through careful instruction or self-instruction,
but it will always retain its accent. While Asperger adults go on to successful careers and interesting lives, they will always
be considered unusual people.

I'VE NEVER HEARD OF IT BEFORE.

That's not too surprising. Pediatricians dont
study it in medical school, teachers dont learn about it in education college, and the mass media rarely covers it. Until
the 1980s, the condition didnt even have a name, even though Hans Aspergers original work was done in the 1940s. It is only
very recently that the condition has received much attention at all. However, as professionals are becoming more informed
about the condition, they are discovering that there is a fair amount of Asperger Syndrome out there.

You may remember
an odd child from your grade-school years - one that had no friends, who was always preoccupied with some obsessive interest
that no one else cared about, who said the strangest things at the strangest times. Though the syndrome has only recently
been named, these children have been living and growing up alongside other children for centuries. Some have become successful
and happy as adults despite their undiagnosed problems, teaching themselves over time how to navigate around their deficits.
Others have gone on to live lives of confusion and frustration, never understanding why the world didnt make much sense to
them.

With the recognition of Asperger Syndrome, we now can give a new generation of Asperger children a chance at
the same kind of life that other children have.

GREAT. SO HOW DO WE FIX IT?

We can't fix it. Despite all the
marvels of modern science, there are still some problems that can't be cured. Nobody knows what causes Asperger Syndrome,
though most scientists acknowledge a genetic factor. So the deficits your grandchild has can only be understood, minimized
and worked around. They will require accommodating on everyones part. But in time, with proper programming, the childs behavior
and understanding of the world should improve.

Specialized therapies for autism disorders are available, but in most
cases, the parents must bear the full cost. This can cause tremendous financial strain on the family. In addition, while most
regions require specialized programming for Asperger children, these programs are rarely sufficient for the childs needs.
So the parents must fill in the gaps with their own home-made programming.

Drug therapies are also sometimes available
in cases where extreme behavior needs to be controlled. But these drugs dont treat the cause of Asperger Syndrome. So even
if some of the symptoms can be relieved with drugs, the central problems still remain.

A LOT OF KIDS HAVE THESE SORTS
OF DIFFICULITES. IT'S JUST A PART OF GROWING UP, ISN'T IT? AFTER ALL, HE LOOKS PERFECTLY NORMAL TO ME.

He is normal.
And he has the capacity to grow up to become a wonderful, normal adult - especially now that he has been diagnosed and is
receiving special training. But he is normal with a difference.

The deficits that comprise Asperger Syndrome are not
always readily apparent, especially in milder cases. The child is usually of average intelligence or higher, yet lacks what
are essentially instincts for other children. If your grandchild seems perfectly normal despite the diagnosis you've been
told about, then he is probably working very hard to make sure he fits in - and its not as easy as it looks.

It is
best to treat your grandchild for what he is - normal. But be prepared to take some advice from those closest to him regarding
what is the best way to handle certain situations.

It may not look like much to you, but Asperger Syndrome is a cause
for concern. Its not at all the same thing as the sort of developmental delay that some children experience, and a professional
trained in its diagnosis can determine the difference. Certainly misdiagnoses are possible. But in such cases, its always
wiser to err on the side of caution. The wait-and-see method is risky when there is evidence suggesting a neurological problem.

SO WHAT IF SHE DOESN'T DO WHAT OTHER KIDS DO? SHE'S ADVANCED FOR HER AGE.

Unchildlike behavior doesnt mean
that a child is too smart for play-dough and playgrounds. Even if she is smart, she still needs to learn the skills of play,
because play is how children learn - about things, about life, and about each other. Precociousness is cute and is sometimes
a source of pride for grandparents, but it is also often an indication that there is an underlying problem that needs to be
addressed - and the earlier the better.

IF ASPERGER SYNDROME IS GENETIC, THEN DOES THAT MEAN WE HAVE IT TOO?

You
might, or you might not. Usually at least one of the parents has some Asperger qualities to their personality, and so it seems
likely that the same might be true of the grandparent generation.

But before you get defensive, remember that Asperger
Syndrome shouldnt be regarded as a source of family shame. Its a difference more than a disorder. And we know it takes all
kinds of people to make the world go around. Many famous people are believed to have had Asperger Syndrome, including Albert
Einstein, Thomas Jefferson, Anton Bruckner, and Andy Warhol. It seems a touch of autism often brings out genius.

And
that's not such a bad thing to have in the family!

WHAT IF I DON'T BELIEVE THE DIAGNOSIS?

That's your privilege.
But keep in mind that the childs parents believe it. They live and work with the child daily and are in a unique position
to notice the deficits. Because they care deeply about that childs future, they aren't concerned about the stigma of a label,
as long as it means the child is eligible for the specialized programming she needs. They have put their pride aside for the
sake of the child and expect the same from the rest of the family.

Consider carefully what could possibly be gained
by refusing to believe the diagnosis. Then consider what could be lost. The parents are already living with a great deal more
stress than other parents, and they dont need the added strain of skeptical or judgmental grandparents. Otherwise you may
suddenly be faced with the pain of being unwelcome in your grandchilds home.

THE CHILD'S MOTHER LOOKS EXHAUSTED ALL
THE TIME. COULD THAT BE A CAUSE?

Its more likely an effect. Consider what her life is like: she has to constantly
monitor what is going on regarding her Asperger child, thwart anything that might trigger a meltdown, predict the childs reactions
in all situations and respond immediately, look for opportunities to teach the child social behavior without creating a scene,
and so on - every minute, every day. So its not surprising that she doesnt feel like sitting down for a cup of tea with you
and making small talk!

The truth is that the majority of mothers of Asperger children struggle with depression. While
the special services she will receive over the next few years should help in some ways, she will still be the one to deal
with the day-to-day difficulties of raising an unusual child.

For many mothers, this means ceaseless work, often to
the exclusion of their own needs. Their physical, mental and emotional exhaustion can have a profound effect on the health
and happiness of the entire family.

For this reason, mothers of Asperger children need those closest to them to give
their full, unconditional support, both in words and in action.

I'D LIKE TO HELP OUT AND GET INVOLVED. BUT MY SON
AND HIS WIFE ALWAYS GET DEFENSIVE NO MATTER WHAT I SAY.

Your son and daughter-in-law are now so used to defending
their child that it comes as second nature. Give them some time. Once they are more certain of your support, they will be
less sensitive.

In the meantime, think carefully before you speak. Choose expressions that suggest sympathy and genuine
curiosity, and avoid those that convey criticism. For example, instead of saying He looks perfectly normal to me, you can
say Hes doing really well. Phrase ideas as questions, not judgments by saying Have you thought about rather than Its probably.

The most destructive things you can say are those that convey your lack of trust in their ability to parent, your
disdain for the diagnosis, and your unwillingness to make accommodations. Here are some real-life examples gathered from mothers
of Asperger children:

"Just let him spend more time with us. We'll whip him into shape!" "She may act that way
at home, but shes not going to do that in MY house!" "He wouldnt act this way if you didnt work." "I managed all by
myself with four kids. You've just got two, and you can't handle them!" "Don't believe everything those psychologists
tell you." "He'll just grow out of it, wait and see!" "There's nothing wrong with her. You're making a mountain out
of a molehill. Are you sure you're not the one that needs to see a psychologist?" "He;s having all these problems because
you took him out of school for that home-schooling nonsense." "Everybody's got to have a problem with a fancy name these
days!" "All you ever do is complain about how hard your life is."

OUCH!

Keep in mind that parents of Asperger
children face these hurtful, humiliating attitudes every day - from bus drivers to teachers, doctors to neighbors. Their tolerance
level for such opinionated criticism is low, especially since they spend every bit of their energy raising their difficult
child. So avoid insensitive comments at all costs. And if you unwittingly blurt out something the wrong way, be sure to apologize.

SO THEN WHAT CAN I DO FOR THEM?

Look for ways to be supportive. Let them know that there is another heart
tugging at the load - and its yours. Keep on the lookout for articles about Asperger Syndrome and send them copies. This shows
that you are interested. Ask lots of questions about the special programs the child is in. Be enthusiastic and optimistic.
Let them know you think theyre doing a great job. At other times, be a sympathetic sounding board when they have difficult
decisions to make, or when they just need to tell someone what an awful day theyve had.

If you live close by, consider
how much you can help by giving the parents an evening out. If youre not certain how to handle the child on your own, then
spend some time shadowing the parents to learn how to do it - or offer to babysit after the child is in bed. Whatever you
can do to help will be appreciated.

WHAT DOES MY GRANDCHILD NEED FROM ME?

He needs to know that you are a
safe haven in a bewildering world. It may seem a lot to ask to be flexible with a child who appears to be misbehaving, but
inflexibility will only put distance between you and the child. If the childs manners and mannerisms drive you crazy, ask
the parents for suggestions on how to set expectations for your house.

Learn to listen to the child when he says he
doesnt want to do something. Maybe some children are happy to spend a couple of hours at a flea market, but think very carefully
before dragging an Asperger child there. Accommodate to his needs, or you run the risk of ruining your time together. When
in doubt, ask the parents for advice.

But in general, just make the decision now that you will spend your time enjoying
the child for what he is - a unique and unusual person. That annoying stubborn streak you see in him is going to be his greatest
survival skill. And even though he seems to be afraid of just about anything, recognize that he is like a blind person - it
takes tremendous courage for him just to walk through each day. Celebrate his courage and tenacity.

TO TELL THE TRUTH,
I DON'T FEEL COMFORTABLE AROUND MY GRANDCHILD. I HAVE NO IDEA WHAT TO DO WHEN SHE ACTS IN HER ODD WAYS.

No one said
it would be easy. But most Asperger kids are easiest to handle in one-on-one situations, so look for opportunities to go for
walks or spend time in the workshed puttering around together. Tell your grandchild your stories, especially those that touch
on aspects of her life affected by Asperger Syndrome. She will love hearing about the time when you were a girl that you blurted
out the secret, or how difficult it was for you to learn to tie your shoes. You might tell her about times you wished you
knew how to say something, or times when you wanted to be alone. Stories like these can create a powerful bond between you
and your grandchild.

You may discover that all she wants to talk about is her pet subject. Dont despair. If its something
you know nothing about, then this is an opportunity to learn something. Search for some magazine articles on the topic so
that you always have something new to share together. In time, you may find that you have ideas for helping her expand her
interests into other subjects. But even if you do nothing more than listen and share her enthusiasm for her favorite topic
in the whole world, your grandchild will learn that Grandma cares.

When you spend time with her with other people
or in public places, it might be helpful to think of yourself as a seeing-eye dog. Remember, she is blind in certain ways.
Point out trouble-spots and guide her around them, explain social situations that she can't see, and narrate what you are
doing as you do it. By doing so, youll help her to feel more secure with you, and youll be actively participating in her special
programming.

One word of caution: watch the emotional levels. Asperger children often have great difficulty sorting
out emotions. If you get angry, the child could lose control because she is unable to deal with your anger and her own confusion
at the same time. Reign in your temper when the child is clumsy, stubborn, or frustrated. In situations where you feel you
really need to be firm, keep your tone calm, your movements slow and even, and tell the child what youre going to do before
you do it. Get advice from the parents how to deal with little meltdowns so that you are prepared in advance, but do your
best to avoid triggering them. Here are some simple DO's and DONT's to remember when spending time with your grandchild:

Do praise the child for his strengths. Do get involved in the childs interests. Do learn what sorts of activities
are recommended for the child. Do acknowledge the childs expressions of frustration. Do respect the childs fears,
even if they seem senseless. Do control your anger. Dont tell the child she will outgrow her difficulties. Dont
joke, tease, shame, threaten, or demean the child. Dont talk to him as if he were stupid. Dont compare him with his
siblings. Dont feel helpless - ask for help.

YESTERDAY's child was
born in the 1800's. As a young boy, he was considered medically fragile. Every respiratory illness known to mankind in that
age seemed to seize him. Even though YESTERDAY's childspent many of his early years ill, this did not stop his insatiable
curiosity and boyish escapades. TODAY's child would be described as "just being a boy."

YESTERDAY's child often found
himself in risky life-and-death situations. One time, around the age of five, this boy nearly drowned in a canal; and later
he almost smothered as he sank into the depths of a grain elevator. TODAY's child would be described as "having no common
sense."

YESTERDAY's child was found asleep in the barn in a nest he had constructed, lying on top of the chicken and
goose eggs he was trying to hatch. TODAY's child would be called "weird, eccentric." "Get off those eggs, you'll crack them!"

YESTERDAY's child drove his parents to exhaustion by his persistent questioning of the world around him, determined
to know the "whys," "what fors," and "what abouts" of his world. TODAY's child is searching for someone to ask the questions
to.

YESTERDAY's child, with no malice aforethought but only out of the intense curiosity of an inquisitive mind, set
his father's barn on fire. For this he was publicly thrashed by his father, who tried to instill in him the serious consequences
of his actions. TODAY's child would be called a "juvenile delinquent."

After only three months of formal education,
YESTERDAY's child walked out of his school in a fit of rage. Running home, he could hear the thoughts of the schoolmaster
echoing in his head: "stupid.... stubborn...difficult." Thus, at the tender age of eight, YESTERDAY's child refused to return
to school. The next day, YESTERDAY's mother gave the schoolmaster a piece of her mind and withdrew the boy from school. From
that day onward, she became YESTERDAY's teacher. TODAY's child would be called "a problem child, a bad boy, oppositional."
And TODAY's mother would be told she was "highly excitable, and coddling her child." She would be encouraged by all the experts
to force her child to return to school because "He'll outgrow it. He's got to learn to adjust."

YESTERDAY's child
went swimming with a friend in a nearby creek. When the friend didn't surface for air, YESTERDAY's child waited for what seemed
like forever. As darkness fell, hein his own unique five-year-old logicconcluded that it was time to go home. As the town
was trying to piece together the disappearance and drowning of his friend, YESTERDAY's child tried to explain how he waited
for what seemed like forever..... TODAY's child would be treated for "Conduct Disorder" and undoubtedly find himself one step
away from the juvenile justice system.

YESTERDAY's child just couldn't comprehend consequences; that much seems true.
One day he attached wires to the tails of two cats and energetically rubbed their fur. This experiment in static electricity
went astray when he was brutally clawed. In another instance, one unsuspecting childhood friend suffered an upset stomach
after YESTERDAY's child gave him some sort of powder just to see if the resulting gas it produced would send him flying. TODAY's
child would be in long-term therapy for Attention Deficit Hyperactivity Disorder, Pervasive Development Disorder, or some
other behavioral disorder.

YESTERDAY's mother complained constantly about the life-threatening condition of his bedroom.
Fearing for the safety of her family and any others who ventured into the family home, YESTERDAY's mother moved his experiments
into the cellar. YESTERDAY's child called it his laboratory and immersed himself in science, to the exclusion of what other
"normal" kids were doing at his age. TODAY's child would be called "Schizoid," and TODAY's family would be labeled "dysfunctional."
TODAY's child would be spending time in a court-ordered alternative school program, meeting with a psychiatrist twice a week
for therapy, and be attending a class to learn social skills.

At age twelve YESTERDAY's child insisted on going to
work and began successfully earning his own wage. TODAY's child, at that age, would face a closed door to the world of mentorship
in the workplace. TODAY's child would have to search beyond home and work for other avenues to have his abilities accepted
and appreciated.

As you read about YESTERDAY's child, you are probably wondering how he could have survived and how
he could have contributed to society in a positive way. Clearly, YESTERDAY's child had somebody who accepted his uniqueness,
changed his environment to meet his needs, was not intimidated by his gifts, and tried sincerely to see the world through
his eyes.

CHRISTMAS
is a notorious flashpoint for marital arguments, when women complain that their men do not understand their feelings and men
claim that they do not know what all the fuss is about. By Boxing Day most rows are forgotten. But for the thousands of British
women married to men with autism this state of tension is an extreme and lifelong problem leading to loneliness and despair.

One
in 250 people has Aspergers syndrome, a type of autism that affects people of normal to very high intelligence. It affects
about ten times as many men as women. Although the stereotype of autism is of isolated loners, many people with Aspergers
get married without realizing that they have the condition. They often have so little concept of emotions that they do not
realize that their partner is sad, even if they are sobbing, and then ignore it because they have no idea how to offer comfort.
The emotional intimacy of a relationship, for many the reason that they married, is barely there. Some women feel as if they
are going mad.

The
National Autistic Society desperately needs money to offer diagnosis and support to couples affected by Aspergers and to transform
the lives of their children. One of the biggest problems for those new to the condition is to understand how it differs from
typical behaviour involving selfishness or egotism, according to Maxine Aston, the only Relate counsellor specialising in
Aspergers.

The male
chauvinist, or man behaving badly, has a choice: he can sit down and empathize with his wife, and he doesnt have to go to
the football match. If he has been inconsiderate he has the capacity to recognize it and show remorse, she said. A person
with Aspergers doesnt have a choice. Its not that they wont empathize, they cant.

Ms
Aston was once married to a man with Aspergers, with whom she had three children. The Aspergers caused a complete breakdown
of communication which prevented us from sorting out the problems we had, she said. But my husband was not diagnosed until
the divorce.

Awareness
is crucial. A first step in diagnosis is getting a Partners Pack from the National Autistic Society, she said.It is the sense of loneliness which is the worst. Rachel Kruft Welton, 31, had been in a relationship with
her husband, Nick, 41, for five years before they realized what was wrong. Right
from the first I knew he was a bit eccentric. He was the stereotype of an absent-minded professor, incredibly intelligent,
but very absent-minded and lacking life skills, she said. When his awkwardness became difficult, a GP referred him to a specialist
who made the diagnosis. If we hadnt had the diagnosis our marriage would have broken up, she said. Before, if I was crying he would have sat on the other side of the room and just looked at me, and Id think:
How can you pretend to love me and be so cruel? Now Ive taught him that if Im obviously upset he should hug me, although if
Im looking just a bit down he may or may not notice. He is a very loving man, but he found it hard to show it. Now he works
incredibly hard at making me happy.

Wonderful item written by a Mom struggling to get across to her child's teacher just what he goes through every day.

Balancing the Tray by Lenore Gerould (1996)

Those of us who have daily contact with children with Autism
sometimes have trouble explaining to regular education teachers or administrators the hooks of autism; especially the kinds
of support they need. You're always trying to explain the basics: No, moving the pencil sharpener's location in the classroom
is not what upset Aim. You have to understand that...... No, you can't see autism, its a neurological disorder. Then, I came
up with this analogy. Perhaps it will help others to visualize the support needed.

Try to imagine the child balancing
a large serving tray on one upturned hand. Every distress for that child is like a liquid-filled glass you are putting on
this tray. The distress glasses are unique to each child; but generally include things like auditory or visual over-stimulation,
social interaction, surprises or unexpected changes in the schedule, lack of clear leadership, the number of people in the
room, whatever is sensitive for that child. (Don't forget the ability to read the body English and anxiety of the adults
around them!) The size and weight of the glass for that child varies; just like the distress glasses vary for each child.
Some things are merely shot glass size, while others can be a two liter jug.

At some point the tray is going to
start to wobble; the liquid will start spilling out of the glasses on the tray. The cues that this is happening will vary
from child to child; just as the cause and size of a glass varies from child to child, but generally include regressive behavior,
avoidance or shutting down, giggling or minor acting out to get attention.

Hopefully, someone will help the child
rebalance the tray, or remove some glasses. Perhaps taking a break, or allowing time to refocus or process will work; again
techniques are unique to each kid. If there is no intervention, the addition of one more glass will topple the tray to the
floor.

The cause is not the most recent glass you added, but the fact that the tray was full or too heavy. The
latter is why the child seems so unpredictable to some people. Our efforts should be that the child learns to hold a bigger
tray, or to do minor correction of the tray's balance somewhat independently, but they will always carry that wobbling tray.

Ignoring cues can be disastrous, from classroom disruptions to a major regression. When an Autistic child's tray
crashes to the floor, it is always a major event. Thats why if I hear my son got highly upset over a moved pencil sharpener
and acted out, I do not want to hear that he has to learn to accept change. The sharpener is immaterial, if I learn that
day he dealt with a substitute teacher, a fire drill just as reading was started, dead calculator batteries halfway through
math, a crashed computer in the middle of English, a late bus so that he missed part of home room and some florescent lights
in the class are half out----his tray was already full!

All of the distresses are unavoidable and he'd dealt with
them without a hitch. But each was another glass on his tray. Autistic children need someone around who is familiar with
them, to sense how full the tray is getting and read the cues, so there is intervention before that wobbling tray topples
to the floor. That is why the type of support for these children is critical. Not just a hot body nearby, but the right hot
body whom they can trust will help balance and who knows the hooks.

For all of us, life is a balancing act. But for
Autistic children, the glasses generally break when they hit the floor and it takes a whole lot longer to clean up the mess
and get a new tray.

************************************************************
The following is a letter composed amidst the trials and tribulations of IEP planning and meetings. While the letter was
inspired by a discussion a parent had with her child's Special Ed Teacher, it is actually an OPEN LETTER to anyone who interacts
with children with challenges. The feelings are deep, and had been gestating within the author for 8 years (since her daughter's
birth). The conversation which inspired the letter was one in which Jessica's teacher (of the past 4 years) referenced Jessica's
level of "cognitive impairment".

VIOLETS and DAISIES ~ by Kay Drais

Dear Teacher,

I know
you hold a very deep and rich part of your heart open to all of the exception children that you laugh, cry, struggle and celebrate
life with every day. Please do not construe this letter as personal criticism. I admire your commitment, tenacity and your
love for the children you serve,and I have no doubt that you are a blessing in their lives. I write first, to be true to myself
and my personal inspiration, and also because when you find something good in life, the only contribution available is to
offer what one can, in the hopes that the good can grow ever more good.

When we talked on the phone, and you referred
to "the level of cognitive impairment" of Jessica, I felt as though I had quite unexpectedly been washed away in a tidal wave
of oblivion. I do not see Jessica as impaired.

I see her as different than most of us in gneral terms, but different
is not impaired. Synonyms for impaired are defective, damaged, ruined, incapacitated, mutilated -- synonyms for different
are distinct, non-uniform, differing dissimilar, unusual, uncommon. I prefer to believe, and my heart very clearly tells me
that my daughter is uncommon, not defective.

I guess I had been working under the misconception that you, like me,
did not put much stock in such labelling, and in fact, avoided such frighteningly limiting notions as lenses through which
to view children.

Once I finally groped my way though my incredulous shock, my first impulse was to snatch up Jessica
and RUN -- run as far and as fast as possible way from Jessica's school, far and fast away from what I consider to be a spiritually
primitive educational system, and far and fast away from the fears, judgments and cynicism of people who simply do not understand
my daughter. If being in school for Jessica requires being destined to face preconcieved notions of profound limitations on
a daily basis, the quite simply, who needs it? I honestly believe she would be better off without it. Perhaps that is why
she is so emphatically resistant to our efforts to "educate" her.

I quickly realized however, that running away is
not the answer. For I would have to spend the rest of my life running from lack of understanding, and it is hard to change
misunderstanding when one is clipping along at a fast and breathless sprint.

Instead, I ask you to please consider
how deeply the images and concepts you hold of your children do, in fact, enter significantly into the equation of your relationship
with them, and the natural outcome of that relationship.

Are you aware of the relatively new science of quantum physics?
In the past 10 years, and ever more boldly, quantum physicists have been alerting the world to a fuller understanding of how
profoundly the experimenter impacts the results of any experiment. In fact it is not possible for two people to perform exactly
the same experiment and get exactly the same results.

Further, the same person cannot even repeat an experiment and
get exactly the same results, despite exhausting efforts to ensure controlled environments, etc. The experimenter is affected
by everything in his environment as well as all of his interpretations of it -- and all of *that* impacts the results of any
activity or experiment he may participate in. We are all much more connected to our world, our experiences and one another
than we have historically realized.

Jessica is not a mistake, she is a gift. Her greatest gift is that her apparent
disabilities tend to highlight how we as individuals, communities and institutions tend to respond to that which we do not
understand. Certainly it is comfortting and convenient to label the unknown as inferior/impaired in one fashion or another,
because then it can be neatly set aside and life as we know it can be gotten on with.

People with apparent disablities
stop us dead in our tracks. I know, because I was stopped dead in my tracks when I learned that Jessica was not-your-average
newborn. However, I have come to understand that the way we respond to people who are different in any way, clearly reflects
our own willingness to either expand our horizons, or to shrink back in fear. It is very clear to me now, that the manner
in which we interface with people with apparent disablities is far more reflective of our own personal capacities than those
of the person we interface with.

Institutions (and our educational system is an invested institution) tend to rely
on conformity for survival. Often the reliance on conformity insidiously transforms into a need which can unfortunately (and
often unconsciously) becomes a necessity. Necessary conformity is quite a stifling concept, if you allow yourself to consider
the full ramifications.

I want to state for the record (in bold font) that I do not consider any IQ testing or similar
instruments designed to measure capcities and potential to be *absolutely irrelevant* information regarding any portrayal
of who Jessica is, or any other child, for that matter. I will not be easily convinced that a society who has not yet learned
to live harmoniously together on a daily basis has the capacity to develop any meaningful instrument of measure of human potential.

In basic terms, the IQ testing measures *recognizable* capacity to *adapt* to preconcieved patterns as quickly as
possible. What about imagination? What about spontaneity and creativity? What about personal integrity? To strive to conform
or adapt to society as it functions today in general terms, would be to strive to learn to maniplate, live in fear,frustration,
insensitivity and greed. I have no desire to adapt to that, and I am glad my daughter appears to have little interest as well.

SO WHAT DO I WANT? I want us to hold our judgments, interpretations and projections of each other ligthly. I want
all of us to be brave enough to trust that the beauty and goodness of each of us is innate and sufficient, just as we are.
I want myself and others to be patient with and accepting of Jessica's relationship with this realm, and to look for what
we share and *celebrate* that, and to gift one another with our uniquenesses. I want myself and others to grow beyond a need
to insist that our own particular version of life on earth is the only valid one, simply because we have chosen to adapt to
common means linguistically and methodologically.

As far as I am concerned, unless someone can feel and convey genuine
acceptance of Jessica exactly as she is right now, there will be no platform with any integrity upon which to build meaningful
experiences of growth and unfoldment within Jessica personally, or in relationship to her.

Indulge me for a moment,
and imagine yourself to be a violet growing smack dab in the middle of a beautiful bed of daisies -- and all of your (short)
life, the multitude of daisies surrounding you seem frustrated that you are different. They try endlessly, and to the best
of their abilities to turn your into a daisy, despite the fact that you, while very similar in many ways, are also very different
than the other flowers who share your life. Would it serve you to try to be a daisy when it is clearly true that you aren't
one, and never will be? How would it feel when the well-intentioned daisies around you continually insist that you look and
act more like a daisy than the violet that you truly are? And, have you ever picked a violet and suddenly found yourself wishing
that it were a daisy instead? Wouldn't you be glad of its' violetness, and that be sufficient, or rather exquisite, in and
of itself? Is it any different with people?

I imagine, dear teacher, your mind is now thinking, well, this world
is predominantly of, for and by the daisies. And true, you have generously and with much self-sacrifice spent a good deal
of your time patiently teaching the violet a few daisy tricks, so that she can function effectively in the daisy bed. After
all, she is growing there. And my point is, that if she has to deny her essence as a violet, there is no value at all in learning
daisy skills. If daisy skills, however are optional, and she can be accepted as the violet that she is, she will gracefully
and sweetly unfold into the fullness of her beauty, warmed by the sun, and nurtured by the trust and open-heartedness of her
surrounding daisies.

**Violets, beloved friend and teacher, are NOT impaired daisies.**

I thank you dear teacher,
from the very essence my self, for your wondrous dedication to this fabulous boquet of children you have wlecomed into your
heart.

*************************************

End of letter. I sent copies to the principal, the teachers of
Jessica's mainstreamed classes, and the Director of Special Ed for the District we live in...

As I wrote the letter
and later made corrections before sending it, I realized that the letter was also to myself-- as Jessica's mother and friend.
I want to *be* what I am asking for.

************************************************************

This document is invaluable. It really
sends a message as to what spectrum children go through. When my son's speech therapist asked a group of teachers to participate
in this experiment they all refused.

WHAT IS IT LIKE TO BE A STUDENT WITH AUTISM?

by Susan
J. Moreno, M. A., Parent and Founder, MAAP Services Inc.

Many individuals with autism experience sensory
perception problems. The information that an individual receives from some of his or her sensory information system may be
an extreme of either too much or too little input from that sensory channel (hearing, sight, touch, taste, smell, or proprioception
). Or it may be that at whatever level the information is received, it is either inaccurate or distressing or both. None of
us can know exactly what the sensory perceptions of other individuals is like. However, from personal accounts of individuals
with autism, such as Temple Grandin, we do know that sensory perception and/or sensory processing are areas which frequently
challenge and cause distress to many people who have autism. In different individuals different sensory channels are affected.
For example, one individual may have great difficulty with input from touch and hearing, while another individual may have
a problem with new or strong or certain specific types of smell. The list of variances could go on and on.

In
an attempt to demonstrate to others who wish to become more aware of the challenges of autism and how it may feel to experience
difficulty in processing sensory information, I developed what I call an "autism sensory simulation." I have used
this simulation in demonstrations with students and teachers in various schools around the country. It is my belief that it
has enhanced the empathy of those who experience it. However, I would like to emphasize that this demonstration illustrates
what the sensory difficulties of the person with autism may be like. It does not let us know how it feels to be autistic.
Autism involves many challenges -- not just those which affect sensory perception and processing. Only a person with autism
knows how it really feels!

AUTISM SENSORY SIMULATION

Approximate time (per demonstration): 15 to
20 minutes.

Description: This simulation is intended to be a participatory demonstration of the experience of
receiving distorted and/or distressing sensory information. The intent of this experience is to demonstrate to those not challenged
with autism what the sensory receiving and processing difficulties of people with autism may be like. This demonstration is
more effective if the number of participants is kept small -- around 10 - 15.

Required area and equipment: This
simulation would need a room which could be darkened quickly and thoroughly and which would contain and/ or desks for each
participant. At least two electrical outlets are needed. Obviously a school classroom would be ideal.

Other
equipment: A strobe light, a radio of sufficient size and power to create loud noise levels, one cotton glove (either with
velcro sewn on the pads of the fingers and the palms or with hard nubs on the pads and palms, as with some types of gardening
gloves), and one loofah sponge mitt are needed.

* Participants enter the simulation room and are told to sit
down in the chairs or desks provided. * Participants are welcomed by the demonstrator and are told the basic intent
of the demonstration. * Participants are told to pretend they are a student who has autism who is in a new classroom.
* "Teacher" (demonstrator) introduces him/herself and says that participants must only follow a few simple
rules to get along happily in their new classroom: sit still in their seats: follow simple directions and be reasonably quiet.
* The room lights are turned out, the strobe light is turned on, and the radio is turned on very loud at a point in
between stations (to produce "white noise"). (All three events occur simultaneously.) * "Teacher"
greets each student by shaking his or her hand with the cotton glove and saying, "How are you? What is your name?"
* "Teacher" should constantly and drastically vary her voice level and manner of speaking and should place
herself unusually close and unusually far from each person while speaking and shaking the "student's" hand. *
When "student" pulls back and/or jumps up or makes noise, "Teacher" pats his/her face with the dampened
loofah sponge and screams, "It's all right! Don't be so nervous!" "Teacher" proceeds with steps
IV and V with each "student." * When "Teacher" has finished with the last "student,"
he/she should clap his/ her hands, stamp his/ her foot, and should "stop!" At the exact same time, the lights should
be turned back on and the radio and the strobe light should be turned off. * "Teacher" says, "That's
enough! This is the last straw. If you can't behave, you'll have to leave my classroom!"

Discussion then
follows between the demonstrator and the participants about how this simulation affected the participants and how those feelings
may be present for a person with autism in many situations which are not distressing to others. It is pointed out that this
can result in difficulty in learning, paying attention, and behaving in a way that others deem appropriate.

CAUTION:
Individuals who suspect they may be prone to seizures should not participate in this demonstration, as it could bring on seizural
activity.

This simulation is written up in a small book I wrote called High Functioning Autism Individuals With
Autism: Advice and Information for Parents and Others Who Care published by MAAP Services, Inc., P.O. Box 524, Crown Point,
IN 46307

************************************************************

"Blinded By Their Strengths: The Topsy-Turvy World of Asperger's Syndrome" by: Diane Twachtman-Cullen,
Ph.D., CCC-SLP

"I've come to the frightening conclusion that I am the decisive element in the classroom.
As a teacher, I possess a tremendous power to make a child's life miserable or joyous... In all situations, it is my response
that decides whether a crisis will be escalated or de-escalated and a child humanized or de-humanized." - Haim Ginott

Few could disagree with the sentiments expressed by Ginott, at least in theory. Unfortunately, theory doesn't
always translate into practice, at least not for children with the enigmatic and complex disorder known as Asperger's Syndrome
(AS). Thus, when a crisis occurs, or worse yet escalates, it is often the child who is held accountable, and the teacher who
is exonerated!

Consultants are rarely asked to look at what the school staff needs to know and do to better understand
and address the challenges that accompany Asperger's Syndrome. Rather, they are all too often directed to focus their efforts
on "fixing" the child, as though his or her actions are the result of behavioral decisions, rather than the reflection
of a neurological impairment.

Could it be that Ginott's words were intended only for teachers of typical children?
That is most unlikely. Then what is there about AS that "invites" placing the burden of responsibility with respect
to aberrant behavior on the children who manifest the disability, rather than on those who have the wherewithal to operate
with far greater freedom and flexibility (i.e., their teachers or caregivers)?

One parent's search for answers
to a particularly distressing school situation led her to characterize the plight of her 8 1/2 year old son with AS thusly:
"The good news is he's bright, and the bad news is he's bright!" This revealing description makes a poignant, and
sadly accurate statement about an educational system that not only fails to understand the child with Asperger's, it fails
to recognize that such understanding is in fact necessary if positive change is to occur. An analysis of what this parent
meant by her statement gives one a window on the topsy-turvy world of Asperger's syndrome.

In most disorders,
descriptors such as "more able" and "high functioning" are excellent prognostic indicators. Hence, the
good news. How then can intelligence be considered bad news? The answer to this question lies in the paradoxical nature of
Asperger's syndrome itself.

Individuals with Asperger's are cognitively intact. That is, they possess normal,
if not above-average intelligence. This creates an expectation for success. Further, the pursuit of their restricted repertoires
of interests and activities often results in the amassing of impressive facts, and in an expertise beyond their years. Given
their enormous strengths, and the expectation that they generate, and given the fact that intelligence is a highly-prized
trait in our culture, intellectual prowess in the child with Asperger's syndrome virtually eclipses the social-emotional and
other deficits that are at the heart of the unusual behavior and interests are often seen.

Stated more succinctly,
unmindful of their neurologically-based weaknesses, teachers and/or clinicians get blinded by the strengths of these children.
This situation inevitably leads to a mental set that can be summed up as follows: "If he/she is that smart, shouldn't
he/she know better?" The answer to that question is a resounding "no". In fact, because of the social-emotional
and communication deficits, as well as the presence of symptomatology unique to Asperger's syndrome, these children can't
"know better" until they are taught simply to know (i.e., to understand).

Consequently, in order to
create an hospitable environment for children with Asperger's syndrome in a world that is often inhospitable to their needs,
it s vital that teachers and other caregivers employ direct teaching strategies to address the following specific areas:

Together,
these target areas constitute a kind of life skills curriculum for the more able student. Their inclusion in the student's
IEP can help to ensure that each of these important skill areas gets the attention it deserves. After all, life skills are
far too important to be left to chance!

Diane Twachtman-Cullen is a licensed speech-language pathologist specializing
in autism and related disabilities. She holds a Sixth Year Diploma in early childhood education and a Ph.D in special education.
She was recently the recipient of the Harris Kahn Dissertation Award for completing a doctoral dissertation of distinction.
She is the author of *A Passion to Believe: The Facilitated Communication Phenomenon* to be published in the fall of 1996.
A former two-term president of the Autism Society of Connecticut, she is an adjunct faculty member of Central Connecticut
State University. A frequent workshop presenter, she also provides consulting services throughout the U.S. for individuals
with autism and Asperger's Syndrome.

# # #

Social Behavior in Autism Written by Stephen M. Edelson, Ph.D. Center for the Study of Autism, Salem, Oregon

One of the most characteristic symptoms of autism is a dysfunction in social behavior. Numerous reports written by parents
and researchers have described this problem, and it is thought by many to be the key defining feature of autism. The social
problems can be classified into three categories: socially avoidant, socially indifferent, and socially awkward.

Socially
avoidant. These individuals avoid virtually all forms of social interaction. The most common response is tantrumming
and/or 'running away' when someone tries to interact with him/her. As infants, some are described as 'arching their back'
from a caregiver to avoid contact. For many years, it was thought that this type of reaction to their social environment indicated
that autistic individuals did not like or were fearful of people. Another theory, which is based on interviews with autistic
adults, suggests that the problem may be due to hypersensitivity to certain sensory stimuli. For example, some state that
a parent's voice hurt their ears; some describe the smell of their parents' perfume or cologne as offensive, and others describe
pain when being touched or held.

Socially indifferent. Individuals who are described as 'socially indifferent'
do not seek social interaction with others (unless they want something), nor do they actively avoid social situations. They
do not seem to mind being with people; but at the same time, they do not mind being by themselves. It is thought that this
type of social behavior is common in the majority of autistic individuals. One theory is that autistic individuals do not
obtain 'biochemical' pleasure from being with people. Research by Professor Jaak Panksepp at Bowling Green State University
in Ohio has shown that beta-endorphins, an endogenous opiate-like substance in the brain, is released in animals during social
behavior. Additionally, there is evidence that the beta-endorphin levels in autistic individuals is elevated so they do not
need to rely on social interaction for pleasure. Some research on the drug, naltrexone, which blocks the action of beta-endorphins,
has shown to increase social behavior.

Socially awkward. These individuals may try very hard to have friends,
but they cannot keep them. This problem is common among those with Asperger Syndrome. One reason for their failure to make
enduring social relationships with others may be the lack of reciprocity in their interactions, since their conversations
often revolve around themselves and are self-centered. Furthermore, they do not learn social skills and social taboos by observing
others, and they often lack common sense when making social decisions.

In addition to the above three types of
social deficits,the social cognition of autistic individuals may also be dysfunctional. Recent research has shown that many
autistic individuals do not realize that other people have their own thoughts, plans, and points of view. They also appear
to have difficulty understanding other people's beliefs, attitudes, and emotions. As a result, they may not be able to anticipate
what others will say or do in various social situations. This has been termed as a lack of 'theory of mind.'

Treatment.
Sensory. If the problem appears to be due to hypersensitivity to sensory stimuli,sensory-based interventions may be
helpful, such as auditory integration training, sensory integration, visual training, and Irlen lenses. Another strategy would
be to remove these sensory intrusions from the person's environment.

Biomedical. Naltrexone is usually not
prescribed to improve social interaction; however,research studies and parent reports have often indicated improved social
skills when given Vitamin B6 and magnesium, and/or dimethylglycine (DMG).

Social. A treatment strategy to improve
social behavior is using 'social stories,' developed by Carol Gray. This involves presenting short stories to teach socially
appropriate behaviors. These stories are used to teach the individual to understand the behavior of themselves and others
better.

# # #

Understanding the Student With Asperger's Syndrome: Guidelines for Teachers

Children
diagnosed with Asperger syndrome present a special challenge in the educational milieu. This article provides teachers with
descriptions of seven defining characteristics of Asperger syndrome, in addition to suggestions and strategies for addressing
these symptoms in the classroom.

Behavioral and academic interventions based on the author's teaching experiences
with children with Asperger syndrome are offered. Children diagnosed with Asperger syndrome (AS; see Note) present a special
challenge in the educational milieu. Typically viewed as eccentric and peculiar by classmates, their inept social skills often
cause them to be made victims of scapegoating. Clumsiness and an obsessive interest in obscure subjects add to their "odd"
presentation.

Children with AS lack understanding of human relationships and the rules of social convention; they
are naive and conspicuously lacking in common sense. Their inflexibility and inability to cope with change causes these individuals
to be easily stressed and emotionally vulnerable. At the same time, children with AS (the majority of whom are boys) are often
of average to above-average intelligence and have superior rote memories. Their single-minded pursuit of their interests can
lead to great achievements later in life.

Asperger syndrome is considered a disorder at the higher end of the
autistic continuum. Comparing individuals within this continuum, Van Krevelen (cited in Wing, l99l) noted that the low-functioning
child with autism "lives in a world of his own," whereas the higher functioning child with autism "lives in
our world but in his own way" (p.99). Naturally, not all children with AS are alike.

Just as each child with
AS has his or her own unique personality, "typical" AS symptoms are manifested in ways specific to each individual.
As a result, there is no exact recipe for classroom approaches that can be provided for every youngster with AS, just as no
one educational method fits the needs of all children not afflicted with AS.

Following are descriptions of seven
defining characteristics of Asperger syndrome, followed by suggestions and classroom strategies for addressing these symptoms.
(Classroom interventions are illustrated with examples from my own teaching experiences at the University of Michigan Medical
Center Child and Adolescent Psychiatric Hospital School.) These suggestions are offered only in the broadest sense and should
be tailored to the unique needs of the individual student with AS.

Insistence on Sameness Children with AS
are easily overwhelmed by minimal change, are highly sensitive to environmental stressors, and sometimes engage in rituals.
They are anxious and tend to worry obsessively when they do not know what to expect; stress, fatigue and sensory overload
easily throw them off balance.

Programming Suggestions - Provide a predictable and safe environment; -
Minimize transitions; - Offer consistent daily routine: AS must understand each day's routine and know what to expect
in order to be able to concentrate on the task at hand; - Avoid surprises: Prepare the child thoroughly and in advance
for special activities, altered schedules, or any other change in routine, regardless of how minimal; - Allay fears
of the unknown by exposing the child to the new activity, teacher, class, school, camp and so forth beforehand, and as soon
as possible after he or she is informed of the change, to prevent obsessive worrying.(For instance, when the child with AS
must change schools, he or she should meet the new teacher, tour the new school and be apprised of his or her routine in advance
of actual attendance.

School assignments from the old school might be provided the first few days so that the
routine is familiar to the child in the new environment. The receiving teacher might find out the child's special areas of
interest and have related books or activities available on the child's first day.)

Impairment in Social Interaction
Children with AS show an inability to understand complex rules of social interaction; are naive; are extremely egocentric;
may not like physical contact; talk at people instead of to them; do not understand jokes, irony or metaphors; use monotone
or stilted, unnatural tone of voice; use inappropriate gaze and body language; are insensitive and lack tact; misinterpret
social cues; cannot judge "social distance;" exhibit poor ability to initiate and sustain conversation; have well-developed
speech but poor communication; are sometimes labeled "little professor" because speaking style is so adult-like
and pedantic; are easily taken advantage of (do not perceive that others sometimes lie or trick them); and usually have a
desire to be part of the social world.

Programming Suggestions Protect the child from bullying and teasing;
In the higher age groups, attempt to educate peers about the child with AS when social ineptness is severe by describing his
or her social problems as a true disability. Praise classmates when they treat him or her with compassion. This task may prevent
scapegoating, while promoting empathy and tolerance in the other children;

Emphasize the proficient academic skills
of the child with AS by creating cooperative learning situations in which his or her reading skills, vocabulary, memory and
so forth will be viewed as an asset by peers, thereby engendering acceptance; Most children with AS want friends but simply
do not know how to interact. They should be taught how to react to social cues and be given repertoires of responses to use
in various social situations. Teach the children what to say and how to say it. Model two-way interactions and let them role-play.
These children's social judgment improves only after they have been taught rules that others pick up intuitively. One adult
with AS noted that he had learned to "ape human behavior." A college professor with AS remarked that her quest to
understand human interactions made her "feel like an anthropologist from Mars" (Sacks, l993, p.112);

Although
they lack personal understanding of the emotions of others, children with AS can learn the correct way to respond. When they
have been unintentionally insulting, tactless or insenstive, it must be explained to them why the response was inappropriate
and what response would have been correct. Individuals with AS must learn social skills intellectually: They lack social instinct
and intuition;

Older students with AS might benefit from a "buddy system." The teacher can educate a
sensitive nondisabled classmate about the situation of the child with AS and seat them next to each other. The classmate
could look out for the child with AS on the bus, during recess, in the hallways and so forth, and attempt to include him or
her in school activities.

Children with AS tend to be reclusive; thus the teacher must foster involvement with
others. Encourage active socialization and limit time spent in isolated pursuit of interests. For instance, a teacher's aide
seated at the lunch table could actively encourage the child with AS to participate in the conversation of his or her peers
not only by soliciting his or her opinions and asking him questions, but also by subtly reinforcing other children who do
the same.

Restricted Range of Interests Children with AS have eccentric preoccupations or odd, intense fixations
(sometimes obsessively collecting unusual things). They tend to relentlessly "lecture" on areas of interest; ask
repetitive questions about interests; have trouble letting go of ideas; follow own inclinations regardless of external demands;
and sometimes refuse to learn about anything outside their limited field of interest.

Programming Suggestions
Do not allow the child with AS to perseveratively discuss or ask questions about isolated interests. Limit this behavior
by designating a specific time during the day when the child can talk about this. For example: A child with AS who was fixated
on animals and had innumerable questions about a class pet turtle knew that he was allowed to ask these questions only during
recesses. This was part of his daily routine and he quickly learned to stop himself when he begain asking these kinds of questions
at other times of the day;

Use of positive reinforcement selectively directed to shape a desired behavior is the
critical strategy for helping the child with AS (Dewey, 1991). These children respond to compliments (e.g., in the case of
a relentless question-asker, the teacher might consistently praise him as soon as he pauses and congratulate him for allowing
others to speak). These children should also be praised for simple, expected social behavior that is taken for granted in
other children.

Some children with AS will not want to do assignments outside their area of interest. Firm expectations
must be set for completion of classwork. It must be made very clear to the child with AS that he is not in control and that
he must follow specific rules. At the same time, however, meet the children halfway by giving them opportunitites to pursue
their own interests;

For particularly recalcitrant children, it may be necessary to initially individualize all
assignments around their interest area (e.g., if the interest is dinosaurs, then offer grammar sentences, math word problems
and reading and spelling tasks about dinosaurs). Gradually introduce other topics into assignments; Students can be given
assignments that link their interest to the subject being studied. For example, during a social studies unit about a specific
country, a child obsessed with trains might be assigned to research the modes of transportation used by people in that country;

Use the child's fixation as a way to broaden his or her repertoire of interests. For instance, during a unit on
rain forests, the student with AS who was obsessed with animals was led to not only study rain forest animals but to also
study the forest itself, as this was the animals' home. He was then motivated to learn about the local people who were forced
to chop down the animals' forest habitat in order to survive.

Poor Concentration Children with AS are often
off task, distracted by internal stimuli; are very disorganized; have difficulty sustaining focus on classroom activities
(often it is not that the attention is poor but, rather, that the focus is "odd" ; the individual with AS cannot
figure out what is relevant [Happe, 1991], so attention is focused on irrelevant stimuli); tend to withdrawl into complex
inner worlds in a manner much more intense than is typical of daydreaming and have difficulty learning in a group situation.

Programming Suggestions A tremendous amount of regimented external structure must be provided if the child
with AS is to be productive in the classroom. Assignments should be broken down into small units, and frequent teacher feedback
and redirection should be offered;

Children with severe concentration problems benefit from timed work sessions.
This helps them organize themselves. Classwork that is not completed within the time limit (or that is done carelessly) within
the time limit must be made up during the child's own time (i.e., during recess or during the time used for pursuit of special
interests).

Children with AS can sometimes be stubborn; they need firm expectations and a structured program that
teaches them that compliance with rules leads to positive reinforcement (this kind of program motivates the child with AS
to be productive, thus enhancing self-esteem and lowering stress levels, because the child sees himself as competent);

In the case of mainstreamed students with AS, poor concentration, slow clerical speed and severe disorganization may
make it necessary to lessen his or her homework/classwork load and/or provide time in a resource room where a special education
teacher can provide the additional structure the child needs to complete classwork and homework (some children with AS are
so unable to concentrate that it places undue stress on parents to expect that they spend hours each night trying to get through
homework with their child);

Seat the child with AS at the front of the class and direct frequent questions to
him or her to help him or her attend to the lesson; Work out a nonverbal signal with the child (e.g., a gentle pat on the
shoulder) for times when he or she is not attending; If a buddy system is used, sit the child's buddy next to him or her
so the buddy can remind the child with AS to return to task or listen to the lesson;

The teacher must actively
encourage the child with AS to leave his or her inner thoughts/fantasies behind and refocus on the real world. This is a constant
battle, as the comfort of that inner world is believed to be much more attrative than anything in real life. For young children,
even free play needs to be structured, because they can become so immersed in solitary, ritualized fantasy play that they
lose touch with reality. Encouraging a child with AS to play a board game with one or two others under close supervision not
only structures play but offers an opportunity to practice social skills.

Poor Motor Coordination Children
with AS are physically clumsy and awkward; have stiff, awkward gaits; are unsuccessful in games involving motor skills; and
experience fine-motor deficits that can cause penmanship problems, slow clerical speed and affect their ability to draw.

Programming Suggestions Refer the child with AS for adaptive physical education program if gross motor problems
are severe; Involve the child with AS in a health/fitness curriculum in physical education, rather than in a competitive sports
program;

Do not push the child to participate in competitive sports, as his or her poor motor coordination may
only invite frustration and the teasing of team members. The child with AS lacks the social understanding of coordinating
one's own actions with those of others on a team;

Children with AS may require a highly individualized cursive
program that entails tracing and copying on paper, coupled with motor patterning on the blackboard. The teacher guides the
child's hand repeatedly through the formation of letters and letter connections and also uses a verbal script. Once the child
commits the script to memory, he or she can talk himself or herself through letter formations independently;

Younger
children with AS benefit from guidelines drawn on paper that help them control the size and uniformity of the letters they
write. This also forces them to take the time to write carefully;

When assigning timed units of work, make sure
the child's slower writing speed is taken into account; Individuals with AS may need more than their peers to complete exams
(taking exams in the resource room not only offer more time but would also provide the added structure and teacher redirection
these children need to focus on the task at hand).

Academic Difficulties Children with AS usually have average
to above-average intelligence (especially in the verbal sphere) but lack high level thinking and comprehension skills. They
tend to be very literal: Their images are concrete, and abstraction is poor. Their pedantic speaking style and impressive
vocabularies give the false impression that they understand what they are talking about, when in reality they are merely parroting
what they have heard or read.

The child with AS frequently has an excellent rote memory, but it is mechanical
in nature; that is, the child may repond like a video that plays in set sequence. Problem-solving skills are poor.

Programming Suggestions Provide a highly individualized academic program engineered to offer consistant successes.
The child with AS needs great motivation to not follow his or her own impulses. Learning must be rewarding and not anxiety-provoking;
Do not assume that children with AS understand something just because they parrot back what they have heard; Offer added
explanation and try to simplify when lesson concepts are abstract; Captialize on these individuals' exceptional memory: Retaining
factual information is frequently their forte;

Emotional nuances, multiple levels of meaning, and relationship
issues as presented in novels will often not be understood; The writing assignments of individuals with AS are often repetitious,
flit from one subject to the next, and contain incorrect word connotations. These children frequently do not know the difference
between general knowledge and personal ideas and therefore assume the teacher will understand their sometimes abstruse expressions;

Children with AS often have excellent reading recognition skills, but language comprehension is weak. Do not assume
they understand what they so fluently read; Academic work may be of poor quality because the child with AS is not motivated
to exert effort in areas in which he or she is not interested. Very firm expectations must be set for the quality of work
produced. Work executed within timed periods must be not only complete but done carefully. The child with AS should be expected
to correct poorly executed classwork during recess or during the time he or she usually pursues his or her own interests.

Emotional Vulnerability Children with Asperger Syndrome have the intelligence to compete in regular education
but they often do not have the emotional resources to cope with the demands of the xlassroom. These children are easily stressed
due to their inflexibility. Self-esteeem is low, and they are often very self-critical and unable to tolerate making mistakes.
Individuals with AS, especially adolescents, may be prone to depression (a high percentage of depression in adults with AS
has been documented).

Rage reactions/temper outbursts are common in response to stress/frustration. Children with
AS rarely seem relaxed and are easily overwhelmed when things are not as their rigid views dicate they should be. Interacting
with people and coping with the ordinary demands of everyday life take continual Herculean effort.

Programming
Suggestions Prevent outbursts by offering a high level of consistency. Prepare these children for changes in daily routine,
to lower stress (see "Resistance to Change" section). Children with AS frequently become fearful, angry, and
upset in the face of forced or unexpected changes;

Teach the children how to cope when stress overwhelms him or
her, to prevent outbursts. Help the child write a list of very concrete steps that can be followed when he or she becomes
upset (e.g., 1-Breathe deeply three times; 2-Count the fingers on your right hand slowly three times; 3-Ask to see the special
education teacher, etc.).

Include a ritualized behavior that the child finds comforting on the list. Write these
steps on a card that is placed in the child's pocket so that they are always readily available;

Affect as reflected
in the teacher's voice should be kept to a minimum. Be calm, predictable, and matter-of-fact in interactions with the child
with AS, while clearly indicating compassion and patience. Hans Asperger (1991), the psychiatrist for whom this syndrome is
named, remarked that "the teacher who does not understand that it is necessary to teach children [with AS] seemingly
obvious things will feel impatient and irritated" (p.57);

Do not expect the child with AS to acknowledge
that he or she is sad/depressed. In the same way that they cannot perceive the feelings of others, these children can also
be unaware of their own feelings. They often cover up their depression and deny its symptoms; Teachers must be alert to changes
in behavior that may indicate depression, such as even greater levels of disorganization, inattentiveness, and isolation;
decreased stress threshold; chronic fatigure; crying; suicidal remarks; and so on. Do not accept the child's assessment in
these cases that he or she is "OK". Report symptoms to the child's therapist or make a mental health referral so
that the child can be evaluated for depression and receive treatment if this is needed.

Because these children
are often unable to assess their own emotions and cannot seek comfort from others, it is critical that depression be diagnosed
quickly; Be aware that adolescents with AS are especially prone to depression.

Social skills are highly valued
in adolescence and the student with AS realizes he or she is different and has difficulty forming normal relationships. Academic
work often becomes more abstract, and the adolescent with AS finds assignments more difficult and complex. In one case, teachers
noted that an adolescent with AS was no longer crying over math assignments and therefore believed that he was coping much
better. In reality, his subsequent descreased organization and productivity in math was believed to be function of his escaping
further into his inner world to avoid the math, and thus he was not coping well at all;

It is critical that adolescents
with AS who are mainstreamed have an identified support staff member with whom they can check in at least once daily. This
person can assess how well he or she is coping by meeting with him or her daily and gathering observations from other teachers;
Children with AS must receive academic assistance as soon as difficulties in a particular area are noted. These children are
quickly overwhelmed and react much more severely to failure than do other children;

Children with AS who are very
fragile emotionally may need placement in a highly structured special education classroom that can offer individualized academic
program. These children require a learning environment in which they see themselves as competent and productive. Accordingly,
keeping them in the mainstream, where they cannot grasp concepts or complete assignments, serves only to lower their self-concept,
increase their withdrawl, and set the stage for a depressive disorder. (In some situations, a personal aide can be assigned
to the child with AS rather than special education placement. The aide offers affective support, structure and consistent
feedback.)

Children with Asperger's syndrome are so easily overwhelmed by environmental stressors, and have such
profound impairment in the ability to form interpersonal relationships, that it is no wonder they give the impression of"fragile
vulnerability and a pathetic childishness" (Wing, 1981, p. 117). Everard (1976)wrote that when these youngsters are compared
with their nondisabled peers, "one is instantly aware of how different they are and the enormous effort they have to
make to live in a world where no concessions are made and where they are expected to conform" (p.2).

Teachers
can play a vital role in helping children with AS learn to negotiate the world around them. Because children with AS are frequently
unable to express their fears and anxieties, it is up to significant adults to make it worthwhile for them to leave their
safe inner fantasy lives for the uncertainties of the external world. Professionals who work with these youngsters in schools
must provide the external structure, organization, and stability that they lack.

Using creative teaching strategies
with individuals suffering from Asperger syndrome is critical, not only to facilitate academic success, but also to help them
feel less alienated from other human beings and less overwhelmed by the ordinary demands of everyday life.

# #
#

"Five Survival Strategies To Help Children
With Asperger's Syndrome Overcome Inertia" by George T. Lynn, M.A., C.M.H.C.

The Aspergers child may have a powerful
predisposition to inertia especially when he is stressed or tired. This profound lack of energy or ability to initiate action
is seen in the child's school, home, and social life.

Inertia may prevent the AS child from being able to get out
the door to school. If his parents do get him to school he freezes up when he has to make social contact with other kids sitting
at a table in the lunchroom. He is stuck in the corner of the room and has to be gently guided out by a teacher. Feeling totally
overwhelmed, he ends up staring straight ahead and cannot remember what hes supposed to do next. When his teacher addresses
him he grunts out a reply but does not return to his work. He may have a very difficult time telling his teachers what he
needs and he tends to be passive in the face of their criticism. He cringes at his PE teacher's verbal abuse and does not
report it.

In a social setting, he is rarely the first one to initiate a social contact and needs to see someone else
doing it first. Inertia may interfere with the performance of ordinary tasks at home. One of my teenage AS clients has a great
enjoyment of cooking, but he has great difficulty maintaining the sense of flow and sequences required to put together a recipe.
He often totally "spaces out." At these times, he told me, his body slows almost to stopping and he will stare at the recipe
as if he is waiting for it to somehow come to him.

One Aspergers boy I worked with was badly beaten up by several
teenage muggers at a bus stop at night because, though he was proficient in Karate, he was not able to initiate the attack
and carry it through in a setting different from where he was trained."Go ahead. You initiate," he said to one of his muggers
who proceeded to beat the stuffing out of him. It did not occur to him that the only way he could prevail in the situation
was to close in and attack aggressively, once it was clear that he was gravely threatened. And it did not occur to him that
he was not encountering the other kids in the safety of his dojo, under the supervision of his teacher. His inability to initiate
action was complicated by his inability to have a practical or adaptive response to the kids threatening him.

This
lack of ability to initiate activity probably relates to the fact that Aspergers kids may be deeply apraxic when it comes
to affective, cognitive, and behavioral tasks. That is they do not automatically visualize how movements will look, what conversation
with others might sound like, or generally what will happen in the future. Having no way of seeing the potential future, the
child cannot plan his present action and so does nothing.

"Normal" people continually feed themselves flashes of images
of the next movement a split second before the movement happens. The child with Asperger's Syndrome may lack this awareness.
As a result he is slowed in movement to the point of not moving at all.

He does not know why he cannot accomplish
things and will seem bewildered when you ask him about it. Because of his learning differences everything in his life is frustrating
to him and he is getting nothing but failure experience.

This predilection for inertia is not a sentence of permanent
institutionalization for the child but is an indication that his learning curve is different from normal children.

For
example, Aspergers children may become very proficient in the martial arts, but they usually have to be shown every move that
is possible and have to physically rehearse every move. (Including their response to situations on the street-training which
would have helped the child described above.) To learn how to play baseball, the child has to be taken physically through
each position on the field and be coached through the movements of the player of that position much the way you would coach
someone who is learning a dance. Once the child learns the feel of a movement, he may become splendid at its enactment, but
the training process can take a long time.

Here are five survival strategies to help him realize his gifts and reduce
the challenges posed by his attentional differences.

Consult with him to find ways to reduce the stress that he experiences.
Talk to him about what is going on at school or on the job. Aspergers children tend to be very proud. If they cannot follow
along in a class (because of the wrong teaching methods), they may attempt to resolve the issue by just refusing to get on
the bus in the morning. Its easier to say "hell no I wont go" then to say "I feel stupid not being able to do the work. Help
me!" If they cannot keep up the pace in a job that requires tight teamwork, they are apt to throw down their apron and leave
in a fit of anger and frustration.

Use a prearranged touch prompt. In the example above of the boy who had the debilitating
"space outs" while cooking, I suggested that his parents help him keep on track by touching him firmly on the shoulder (a
place where he could tolerate strong touch) while suggesting the next step he needs to accomplish in the recipe. A good prompt
should provide just the right amount of verbal and tactile stimulation along with a clear and concrete suggestion for the
next step stated in visual terms: "O.K. Stephen,looks like you need to open the recipe box and look up the card for oatmeal
cookies."

Lead from behind. To reduce inertia you have to get in the habit of following behind the child somewhat.
You go at his speed. If he stops, you stop and get into a consulting role with him. "Jeremy, youre doing great work getting
out the door. You looking for something right now?" Curb your own anger, take a breath, and bridge to his issue. Give
him the time that he needs.

Help him calm by pacing his breathing. If he freezes up and cant get out the door to take
the bus over to his friends house for a birthday party, ask him what you can do to help. If he does not answer, assume that
he is experiencing anxiety, and that though he seems serene and very still on the outside, his mind is racing at break-neck
speed on the inside. Just sit next to him calmly and let your relaxed pace of breathing relax his. Tell him whatever you think
he needs to hear to be more relaxed and then get back to helping him to the next step when he is in a better place to hear.

Teach him binary decision-making. One of the most powerful causes for inertia is the feeling of the Aspergers child
that some task is so vast and complex that he cant possibly accomplish it. To overcome this barrier, teach him how to factor
any problem into two decisions. He makes one of those decisions and then factors the next part of the issue into two more
decisions, and makes one of these decisions until the job is done.

If you want to get him to clean up his room, have
him first make two piles. One pile is for things that stay. One pile is for throwaways. When hes down to the pile for things
that stay, divide it into one pile for clothes and one pile for electronic parts.

When this is done, take each pile
in turn. In the electronic parts pile, put all parts that pertain to current projects on one shelf and all parts from past
projects on another,and so forth. He needs a very concrete way to work from the whole to the parts. Its easier to get going
on things if he deliberately uses the "yes/no", "zero/one," language of binary code to break the problem into manageable chunks.

Children with Asperger's Syndrome will often show powerful gifts in the scientific, technical, or artistic fields.
Their gifts are essential to the growth and development of our culture. Luminaries in recent history who have shown Asperger's-like
traits include Albert Einstein, the great Bach interpreter, Glenn Gould, and many of the modern inventive geniuses in the
computer industry. It is hard to measure the contributions of people with this perceptual style because they are often very
self-effacing and publicity shy.

But the anxiety and inertia that kids with AS experience can stifle their lives and
give them only a mediocre return on their potential. Helping them overcome inertia may take many years, but each little step
forward strengthens the child's ability across the board.

Children with
autism present with differences in learning style, impairments in communication and social skill development, and the presence
of challenging behaviors. However, there is considerable individual variability in how these characteristics are manifested.
There is no specific curriculum to teach students with autism. Effective programs are individualized and based on the unique
needs and abilities of each student. The students personal program plan will include a combination of objectives from the
regular curriculum as well as objectives that are unique to the individual.

Saskatchewan Education suggests
that a Personal Progam Plan PPP) be developed through collaboration by a team of people directly involved with the student,
including the parents, classroom teacher, special educator, teacher assistant, speech language pathologist, consultant, educational
psychologist and the student, where appropriate.

The written program plan is intended to guide the day-to-day
work of the educators and to provide information on the types of adaptations and strategies that will be used to accommodate
the student. The program components are:

- Personal and educational data, including assessment information
- Identification of the students strengths and needs - Long-term goals and short-term objectives. This typically
includes goals and objectives related to the regular curricular areas and within the main developmental domains.

For the student with autism/PDD, the key curricular areas are: - communication development including the development
of expressive skills through speech and/or augmentative systems, development of receptive language, and pragmatic skills
- academic instruction appropriate to the developmental level of the student - increasing understanding of the
environment - developing social skills and behaviors appropriate to a variety of contexts and situations - increasing
and developing self control and self-management

Resources and strategies that will be used in working toward
the goals/objectives

- Assignment of responsibility for carrying out specific aspects of the plan - A
process for review and evaluation of the plan. - The Personal Program Plan is not intended to provide the daily plan
of instruction for the student. Rather, it provides an outline of the curricular goals for that individual student, the adaptations,
and effective strategies. It is reasonable to expect that the program may need to be modified throughout the year, as
the student and teachers become more familiar, and as changes take place. - When developing a students personal program
plan, it is important to make adaptations in instruction and classroom management to address the needs of the child.

Communication and social skills are key areas of the childs development and must be addressed in the plan. The following
information is to assist the team in developing a PPP for a student with autism.

1. Use visual methods of teaching (adapted from Quill, 1995a &
Hogdon, 1995a) Children with autism often demonstrate relative strengths in concrete thinking, rote memory, and understanding
of visuospatial relationships, and difficulties in abstract thinking, social cognition, communication, and attention (Quill,
1995a). The use of pictographic and written cues can often aid in helping the student to learn, communicate, and develop self-control.
One of the advantages of using visual aids is that they can be examined for as long as needed to process the information.
In contrast, oral information is transient. Once it is said, the message is no longer available. This may pose problems for
students who have difficulties processing language, and who require additional time (Hogdon, 1995a). In addition, it may be
difficult for the student with autism to attend to the relevant information and to block out the background noises. The use
of visual supports enables the individual to focus on the message. The type of visual aids and symbols vary in complexity.
Objects are the most concrete form. Pictures and photographs are the next level of representation. Graphic symbols are somewhat
more complex and consist of pictographs and written language. However, graphic symbols have been widely used, and have been
successful with children with autism. There are software packages available which provide quick access and the opportunity
to create customized symbols.

For example the Boardmaker@Program(Mayer-johnson 1987-1997) and PICTOCOM SE (Maharaj,
1996). Visual supports can be used in a variety of ways in the classroom. Hogdon(1995)and Quill (1995a, 1995b) provide examples
of different types of supports. Visual aids for organization, such as daily schedules, mini-schedules, activity checklists,
calendars, choice boards Aids for giving directions, such as classroom rules, file cards with directions for specific tasks
and activities, pictographs and written instructions for learning new information.

- Strategies for organizing
the environment, such as labeling objects and containers, signs, lists, charts, and messages. - Aids for social development
such as posting rules and routines, and teaching social skills through the use of Social Stories (Gray, 1993a, 1993c). A social
story is a description of a social situation which includes the social cues and appropriate responses, and is written for
a specific situation for the individual student. For further information, refer to the section . - Aids to assist in
managing challenging behaviors and developing self-control. This may include rules, as well as pictographs, which provide
a cue for expectated behavior. - The key question to ask when planning an activity or giving an instruction is "How
can this information be presented in a simple visual format?" The selection of visual aids is guided by an understanding
of the child and his/her abilities and responses. Many examples of visual supports are provided in the book Visual Strategies
for Improving Communication (Hogdon, 1995). This book is available for purchase from the Saskatchewan Education Learning Resource
Distribution Centre and available for loan from the Saskatchewan Education Resource Centre.

2. Provide a structured,
predictable classroom environment. This is not to be confused with an authoritariation approach. The environment should be
structured in the sense that it provides consistency and clarity, students know where things belong, they know what is expected
of them in a specific situation, and can anticipate what comes next.

3. Provide a customized visual daily schedule.
Vary tasks to prevent boredom, and alternate activities to reduce anxiety and possibly prevent some inappropriate behaviors.
For example, alternate familiar, successful experiences with less preferred activities. It may be helpful to alternate large
group activities with opportunities for calming activities in a quiet environment. In addition, the incorporation of physical
activity and exercise at points throughout the day is helpful.

4. Know the individual, and maintain a list of
strengths and interests.

5. Provide positive praise while learning, and provide information about what the student
does right or well.

6. Use meaningful reinforcements. The student with autism may not be motivated by common
reinforcers. He/she might prefer some time spent alone, time to talk to a favorite staff member, a trip to the cafeteria,
an exercise routine such as going for a walk, time to play with a favourite object, music, playing in water, getting to perform
a favourite routine, items that provide specific sensory stimulation, or sitting at the window. It is important to know what
is reinforcing for each child.

7. Consider sensory factors in instruction and environment. Some of the factors
to note are:

Visual- Are there distracters such as light, movement, reflection, or background patterns? Consider
the eye level of the student, and the position of the teacher in relation to the student, and distracters that may interfere
with attention. Also consider the time required to shift attention. Auditory - Are there fans, loud speakers, fire
alarms, several people talking at once, air conditioners, bells, dogs barking, or scraping? What is the general sound level,
and the predictability and repetitiveness of sounds? Consider the individuals comprehension of verbal information and the
time typically required to process auditory information and to shift attention. Tactile - Are there textures which
seem to be aversive? Are temperatures appropriate? Does the student demonstrate a need to explore through touch and yet avoid
being touched? What is the level of ability/defensiveness in the use of objects? Vestibular - Consider the students
need to move and exercise. What are the individuals reactions to movement? Taste - Consider the preferences, dislikes,
textures and temperatures of foods.

8. Note tasks and activities which create frustration and examine the environment
for items, sounds and activities that may result in sensory overload for the individual. Make available those sensory experiences
that may be calming for the student, and adapt tasks and materials to promote successful participation. When feasible, decrease
environmental distracters that interfere with learning or confuse, disorient or upset the student.

9. Have a relaxation
area. At times, it may be necessary to have a calm, quiet, designated area where the student can go to relax.

10.
Plan and present tasks at an appropriate level of difficulty.

11. Use age-appropriate materials.

12.
Provide opportunities for choice.

13. Avoid long strings of verbal information. Break down instructions and
use visual aids.

14. Pay attention to processing and pacing issues which may be linked to cognitive and/or motor
difficulties, and give the student ample time to respond.

16. Introduce unfamiliar tasks in a familiar environment when
possible. When this is not possible, prepare the individual for the new environment through the use of visual aids such as
pictures, videotapes, and/or social stories.

17. Use organization aids and visual supports to assist the student
to attend to pertinent information, and to teach new tasks.

18. Provide opportunities for meaningful contact
with peers who have appropriate social behavior. Involve the student in shared learning arrangements. Pair with buddies
for walking down the hall, on the playground, and during other unstructured times. Vary peer buddies across time and activities,
to prevent dependence on one child. Peers may also be involved in providing individualized instruction. Cross-age peer supports/buddies
can be arranged by assigning an older student to assist the student with autism. Pair students while attending special school
events such as assemblies and clubs. Facilitate involvement in after-school or extracurricular activities. Assist the student
with autism to support his/her classmates or younger children in other classrooms. If your school has an arrangement where
a class of older students is paired with a younger class, ensure that the student with autism is also paired, and provide
the necessary supports for success. It will be necessary to teach appropriate social behavior, and to provide the student
with situation-specific expectations for behavior. Information on the development of social skills is provided in the section.

19. Encourage independent effort and incorporate proactive measures to reduce the likelihood of becoming dependent
on prompts. Use visual aids to decrease the reliance on prompts from the teacher/teacher assistant. Be careful that the teacher
assistant is not always closely positioned next to the student; positioning the assistant away from the student and changing
teacher assistants may help to avoid dependency. Provide visual organizational aids such as schedules, task outlines, check
lists, charts, and involve the student in using them. Increase awareness of environmental cues. Teach in natural environments
that contain the cues and reinforcement that prompt and maintain the behavior.

20. Plan for transitions and
prepare the student for change. This can be done with the aid of visual schedules to inform changes in routine. Social stories
can also be used to prepare the student for new situations.

21. Direct and broaden fixations into useful activities.

22. Develop talent areas. If the child demonstrates a particular interest and strength in a specific area (i.e.,
music, drama, art, graphics, computer), provide opportunities to develop further expertise in the area. This may not only
provide enjoyment and success, but may also lead to the development of skills for future employment. ____________________________________________________________
Strategies for Communication Development

Programs to facilitate the development of communication include natural language interventions
to teach functional language skills in the social context where they will be used (Koegel, Koegel, Frea & Smith, 1995).
The classroom and school environments provide a wealth of opportunities to develop functional communication within social
contexts, and to promote generalization. However, opportunity alone will not address the communication needs of the student
with autism. The identification of specific skills for instruction and strategies for developing the targeted skills are needed.

The communication goals and objectives for the student with autism are best determined in collaboration with
the parents and a speech language pathologist, and are based on the abilities and needs of the student. The speech and language
pathologist can assist in assessment of communication skills and provide suggestions and strategies tailored to the unique
needs and characteristics of the student.

The following are some general strategies and suggestions to assist
with communication:

1. Focus on developing interaction and communication in the environments in which the child
actually communicates.

2. For the young child it may be necessary to provide some structured teaching to develop
social and communicative play. This can be done through the provision of structured play opportunities which incorporate the
childs interests. Modeling, physical prompts, visual cues and reinforcement are used to facilitate attention, imitation, communication
and interaction.

3. Talk at a sentence level, using vocabulary that is appropriate to the students comprehension
capability. Use language that is clear, simple and concise. For students with more severe communication disability, choose
familiar, specific, and concrete words, and repeat as necessary.

4. Teach the student to listen. The use of
visual supports may aid in obtaining and maintaining attention.

5. It may be necessary to talk more slowly or to
pause between words to allow time for the student to process the information. The pace of speech is dependent on the ability
of the individual child.

6. Use visual input to aid comprehension of oral speech.

7. When working
with students who are higher functioning, it is easy to assume that the student is understanding information, particularly
if they are able to repeat it. However, even though there may be good recall, the understanding may not be there. It is important
to avoid long strings of information, to use visual supports to aid comprehension, and to check for understanding.

8. Use social stories to explain events/activities.

9. Teach new vocabulary in a variety of contexts and
using a visually-based approach.

10. It is important that those involved with the student have a thorough knowledge
of the students form of expression and that they adjust their expectations for communication accordingly.

11.
For students with limited expression, accept restricted verbal and nonverbal behavior as communicative.

12. Set
up communication opportunities to encourage expression. This can include:

- situations to encourage requests,
such as for food, toy or help - situations to encourage negation such as refusing a food or toy, protesting when asked
to do something, or indicating when the student wants to stop - situations to encourage commenting, such as labeling
pictures in books, or objects from a box, greetings or play activities.

13. Some children demonstrate echolalia,
the literal repetition of words or phrases. Echolalia can be used as a teaching tool. The echolalic speech can be shaped through
the use of rules and using the echolalic skill to model more appropriate language (Rydell & Prizant, 1995). The speech
and language pathologist can assist in providing specific suggestions for the individual student.

14. Some children
may benefit from the use of an augmentative communication system. An augmentative communication system is any approach that
supports, enhances or adds to the way a person tells you something (Geneva Centre). It may be recommended for the nonverbal
child, and also for the child who has limited verbal expression, but appears unable to use speech in a functional way to express
wants and needs.

The decision to implement an augmentative communication system, and the selection of the type
of augmentative system, is made by the parents in consultation with a speech language pathologist (SLP). This may be the school
SLP, or referral to another SLP with expertise in the area of autism and augmentative communication systems.

The
educators role is often to encourage the student to use their augmentative means of communication to express themselves and
to supplement oral speech. There are a variety of augmentative systems including gestures, pictures, symbols, and/or technological
devices. One type of augmentative system that is frequently used with individuals with autism is the Picture Exchange System
(PECS) (Bondy & Frost, 1994). This system involves the use of symbols or pictographs to communicate. Instruction is provided
through naturally occurring situations and begins with symbols that are highly reinforcing for the individual. The student
is taught the concept of exchange, and is systematically moved through a sequence of strategies to use symbols to communicate
in a variety of settings and situations.

15. Virtually all individuals with autism have difficulty with pragmatics
- the interpretation and use of language in social situations. Even those individuals who have a good vocabulary and appear
to have a command of the language may have a restricted understanding of social and conversational interactions. The social
use of language is an important area for instruction for students with autism. Carol Gray (1994) has developed a Comic Strip
Conversation strategy for teaching conversation skills through the use of simple drawings. These drawings illustrate what
people say and do and emphasize what they may be thinking. A set of eight symbols is used to represent basic conversational
skills such as listening, interrupting, loud and quiet words, talk and thoughts. Colours may also be incorporated to represent
the emotional context. (Grays book Comic Strip Conversations is available for loan from Saskatchewan Education Resource Centre).
Social Stories (Gray, 1993a, 1993c, 1994) with scripts can also be used to develop conversation skills and communication
appropriate to specific social contexts and situations.

To facilitate social communication, structure interactions
around the students activity preferences and routine. Encourage informal and formal communicative social exchanges during
the day. Individuals with autism have difficulty understanding subtle social messages and rules, and also have problems interpreting
nonverbal communication from others.

It may be helpful to provide the student with the concrete rule when one
does exist, and to present this in a visual format, such as writing it down or incorporating the rule into a social story
or comic strip conversation.

Students also need opportunities for social interactions and community-based experiences
in order to practice the skills.

Guidelines and Strategies for Social Skills Training The following strategies
and recommendations were adapted from Attwood (1998), Dunlap, et al., 1991), Geneva Centre (1994), Gray (1993a, 1993b, 1993c),
Hawkins (1995), Indiana Resource Center for Autism (1997), Jenkins, Odom & Speltz (1989); Koegel & Koegel (1995),
Koegel & Koegel, Hurely & Frea (1992), and Quill (1995a, 1995b). One of the defining characteristics of autism and
pervasive developmental disorders is the impairment in social interactions and social skills. Social skill development is
an essential curricular area for students with autism, and is also a crucial component of any intervention plan for changing
problem behaviors.

1. When addressing social skill development, it is essential that the student have the opportunity
to participate and interact in a variety of natural environments where appropriate models, natural cues and stimuli, and functional
reinforcers are available. Placement within integrated environments provides this access to peer models and social opportunities.

2. In general, individuals with autism need explicit teaching to develop social skills and understanding of
social situations.

3. One of the most helpful methods for teaching social skills is the use of Social Stories,
a strategy developed by Carol Gray (1993a). A social story is a description of a social situation which includes the social
cues and appropriate responses, and is written for a specific situation for the individual student.

The story
can be used for a variety of purposes, including facilitating the inclusion of students in regular education classes, to introduce
changes and new routines, to explain reasons for the behavior of others, to teach situation-specific social skills, and to
assist in teaching new academic skills.

The process begins with the identification of student needs through
observation and assessment. Once a difficult situation is identified, the author observes the situation and attempts to consider
the perspective of the student in terms of what will be seen, heard, and felt. A story is written at an appropriate comprehension
level for the student, and includes descriptive, directive, and perspective statements. The descriptive sentences provide
information on the setting, activity and people involved. The directive statements are positive statements of the desired
response for a given situation, and the perspective statements provide a description of the possible reactions of others.

Gray and Garand (1993) suggest three basic approaches for implementing a social story:

For a student
who reads independently, the story is read twice by an adult, followed by the student reading it back. Then the student reads
it daily. If the student does not read, the story may be recorded on a cassette tape with a signal (i.e., bell) to turn the
pages. The student is taught to "read" the story, and reads it daily. Videotape the social story to incorporate
video modeling. The story is read aloud on a videotape, with one page on the screen at a time.

Extensive information
on the use of social stories as well as guidelines and examples are provided in the resources authored by Carol Gray in the
Resource List.

4. The use of social stories as well as other visual supports are an integral part of a comprehensive
social skills program for a student with autism. They can be incorporated in teaching students complex social behaviors and
survival skills that are needed in everyday situations. Developing an understanding of the basic rules associated with a given
situation will help the child to adapt to the social context, and may prevent increased anxiety and reduce the reliance on
inappropriate coping behaviors. Waiting - Visual cues such as an object, pictures and written words can provide concrete information
to make waiting less abstract and more specific to the situation.

Taking turns - this can be taught through
the use of social stories as well as the use of a picture or pictograph to cue the child. It may also be necessary to provide
some instruction and rehearsal in turn-taking activities.

Transitions - the use of social stories and providing
warnings with visual cues can aid in making the transition from one activity to another. This can be particularly difficult
if the student has not completed the activity, and the student may need to be prepared for the possibility of having to finish
later.

Changing the topic in conversation - Some students may perseverate on one topic. Visual rules, established
time limits, and setting a time and place to engage in a favorite topic may help in teaching the student when he/she needs
to end and/or change the topic.

Finishing - it may help to teach the student to use environmental cues such
as observing and following the behavior other children. It may also be necessary to use a timer, and a method for checking
their own work.

Initiating - social stories can be particularly useful for teaching a student how to approach
others, ask for something, get into a game, say hello, and to leave a situation if upset.

Being flexible - visual
systems can be used to explain changes in a concrete way. If sequenced schedules or picture routines are used, a specific
picture can be removed or crossed out, and another put in its place.

Being quiet - visual supports may be helpful
to teach the specific behaviors for being quiet, and to teach rules for specific situations.

5. Another instructional
strategy which presents information in a visual format is the use of Cognitive Picture Rehearsal (Groden & LeVasseur,
1995). This method involves presenting a sequence of behaviors in the form of pictures or pictographs with an accompanying
script. The student is guided through repeated practice of the sequence of behaviors.

For additional information,
refer to the book Teaching Children with Autism: Strategies to Enhance Communication and Socialization by Kathleen Quill (1995).

6. The student may also need instruction and support to participate in the activities at recess. This can be
a very confusing time. Recess is less structured, with typically a lot of activity and noise. The student with autism may
experience difficulties in coping with the amount of stimulation, as well as in reading the social cues and understanding
expectations for behavior. Gray (1993b) provides a collection of material to socially simplify recess in Taming the Recess
Jungle.

7. It may be helpful to educate peers. This can be done informally or in a more structured manner. Young
children can be provided with prompts to initiate and maintain interaction with their autistic classmate. They may need help
to understand the behavior of the autistic student. For example, the teacher may need to translate nonverbal communication,
or explain that a specific activity is difficult for the student, and identify what the peer can do to help.

Children
can be trained to use strategies to enhance the social competence of the child with autism. Pivotal Response Training (PRT)
is one technique that has been used during recess breaks and has been successful in increasing interactions, initiation, varied
toy play, and language use (Pierce & Schreibman, 1997). PRT involves teaching typical peers to use strategies to (a) gain
attention, (b) give choices to maintain motivation, (c) vary toys, (d) model social behavior, (e) reinforce attempts, (f)
encourage conversation, (g) extend conversation, (h) take turns, and (i) narrate play.

Older students can be
provided with information on autism, the characteristics, and tips for interacting with the student with autism. It is important
that parents be involved in the decision to discuss autism with their childs peers. They may wish to preview any materials,
or may want to be involved in the presentation.

8. Optimally, the end result of developing specific social skills
is to enable the student to interact with others in a variety of settings, and to facilitate the development of social opportunities
and relationships. Children who demonstrate basic social skills may still have difficulty establishing connections with other
children, and in maintaining interactions with peers. Teachers and parents may facilitate further social interaction through:

- Encouraging a friend to play with the child at home - Enrolling the child in clubs and societies
- Teaching the child to observe other children to follow what to do - Encouraging cooperative games - Modeling
how to relate to the child, and educating other students in the class - Encouraging prospective friendships -
Providing enjoyment at break times - Doing projects and activities which illustrate the qualities of a good friend
- Helping the student to understand emotions through direct teaching of how to read and respond to cues that indicate
different emotions.

9. The student may also benefit from social skill instruction within a small group structured
format. There are a variety of social skills training programs and resources available, such as the Skillstreaming series
(McGinnis, Goldstein, & Arnold, 1990) and The Social Skills Intervention Guide (Elliot & Gresham, 1991).

These programs include an assessment which is used to identify skills for instruction. The lessons follow a similar format
in each of the social skills curricula: (1) identifying the skill and skill components, and when it is used; (2) modeling
the skill; (3) role play; (4) opportunities to practice; and (5) strategies for generalization.

Although these
curricula are not developed specifically for children with autism, they can be used in combination with appropriate adaptations
and supports. In addition, there may need to be a particular emphasis on the strategies for facilitating generalization
of targeted skills.

10. Finally, the goal for all students, including those with autism, is to increase independent
participation in a variety of environments. One method that has been used to increase independence is teaching self-management
procedures (Dunlap, Dunlap, Koegel & Koegel, 1991; Koegel, Koegel, Hurley & Frea, 1992). Self-management involves
teaching the student to monitor their own behavior, and to obtain reinforcement for engaging in the behavior. The process
for teaching self management is:

A recent school meeting with the
teachers at my son's present school and the teachers from his future school (he goes to middle school next year) just proved
to me that some teachers do not have the ability to understand the condition of Asperger's Syndrome.

The stumbling
block for the teacher seems to be that the child appears to look normal and be very bright in many areas. The vocabulary of
many Asperger's children can be amazing and the teacher will often develop the attitude of "if this child is so smart, why
can't he understand my point?" Then the teacher embarks on a crusade to "change" the child, make him be like the other children
which only causes stress for the child.

We had a situation recently where the teacher had the class out in the school
playground, throwing a frisbee at a bottle. This is a very hard thing for my son to do and he is not fond of any activity
remotely resembling sports, so when she asked the class "What would make this game better?", he responded, "Well, not playing
it at all would make it better." Of course, the class laughed, she got mad and called him "rude", he was surprised that he
got in trouble because he was only giving her an answer and then he blew up at her, running off the playground in tears.

Upon
discussing it with the teacher, she maintains that he has to learn what is an appropriate social response in this situation,
which would be to say what she wants to hear, or say nothing at all. All the other teachers at the meeting seemed to agree
with her, which is scary because it means that my son cannot meet their expectations. The teachers have completely missed
the fact that children with Asperger's Syndrome cannot be coerced into "saying the right thing" according to her social behaviour
code of conduct. This is the very problem that Asperger's children have, they are rather blunt, often sound rude without meaning
to, and if you ask them a question, they say what they think.

When dealing with a teacher who has this kind of
stumbling block the best thing you can do is provide her with some information about Asperger's Syndrome and caution her about
trying to "change" your child. (Teachers seem to feel that they are correcting some flaw in the child that the parent should
have corrected as the child was growing up.)

Another suggestion would be to bring up the story of "The Emperor Has
No Clothes". The little boy in the story who speaks the truth about the emperor not wearing any clothing is much like an Asperger's
child, unafraid to say what he thinks.

************************************************************

Social
Skills and Asperger's Syndrome by Barbe Fowler August 20, 2000

Although there are some very sociable Asperger's
children and adults, most of them have great difficulty socializing with other people. This seems to stem from the fact that
they don't use non verbal communication in the same way that neuro typical people do. Rather than go through the polite formalities
before starting a conversation, they tend to bombard the visitor or friend with a lecture about their latest interest right
off the bat.

When my son first started school, he didn't seem to care that other children were making overtures of
friendship. Several children would come up to him and say "Hi" and he wouldn't say anything back. When I questioned him on
this issue, he replied, "Well, yes, I hear them saying Hi but I am not interested in them, so why should I say Hi back?"
He remained very aloof from the other children.

Over the last 4 years he has progressed with his social skills and
can make himself say "Hi" before barraging his listener with a pile of facts. The desire to have friends in Grade 3 made him
pay more attention to his own behaviour and we coached him on how to act friendly, be a good friend and what to expect from
friendships with other children. Role playing, social stories and helping him figure out what was going on in different situations
with his friends helped him develop his friendships.

Peer relationships seems to be the hardest for my son to handle.
If he is approached by an adult and engaged in a social conversation, he is quite sociable. As long as he has not been interrupted
from the latest special interest, he can be quite witty, take turns speaking and be the life of the party. Adults seem to
be less threatening than children due to the fact that they understand his wit, can second guess what his extremely logical
statements mean and are more tolerant of strange behaviours. Children tend to view the behaviour of an Asperger's Child as
rather odd and eccentric, but they can be coached to be more tolerant and supportive by an understanding parent or teacher,
making the social life of an Asperger's child much more rewarding.

************************************************************

Communicating with Asperger's Children by Barbe Fowler October 8, 2000

It has taken me 11 years
to really understand my child and even then, because he has Asperger's Syndrome, I am not at all sure that he understands
me, or if I understand him the way he means to be understood.

Communicating with Asperger's Children can be very tricky
due to their inability to read between the lines and their tendency to take everything you say literally. This difficulty
with communication shows up in many ways. For example, I tried to teach my son the golden rule "Treat everyone the way you
would like to be treated". He didn't get the logic behind this rule because a) why treat someone you don't like the way you
want to be treated, isn't that hypocritical? b) why be polite to strangers when you are not even supposed to speak to them?
My son has tried to follow that rule, but when a Teacher speaks to him in an authoritarian tone of voice, he speaks back in
exactly the same tone of voice! When she then accuses him of being rude, he says she is too! Of course, you can imagine that
this situation escalates to the point of explosive anger on both sides. For my son, it's a very difficult situation. On the
one hand, he is following the rule he was taught, but on the other hand, he gets into trouble for it. Small wonder that
he gets confused and frustrated with "neuro typical" people - we are not logical.

When my son was in Grade 1, I walked
him to the classroom door every morning because he had great difficulty with the noise, crowded hallways and navigating his
way through the school. When other children said "Hi" he never responded, so I got in the habit of prompting him "Can't you
see Amy saying hi?". He would look at me as if I had two heads and just say "yes". Finally, he had enough of this prompting
and asked me "Mum, why do you talk to me like I am an idiot?" When I explained to him that the other children would think
he was unfriendly if he didn't say "hi" back, he responded "That's okay, I am not interested in them anyway."

When
he was younger we used to wonder why we had to explain every little thing in life to him, it was like he was going though
his days with blinders on. We now know that he perceives the world around him much differently than we do and he is capable
of sophisticated thinking way beyond his years. His type of logical reasoning is amazingly accurate and very hard to argue
with.

When you are communicating with your asperger's child, you need to get your brain around a different way of
thinking in order to get your point across, or to appreciate where your child is coming from. I am guilty of laughing at some
of the things my son says even though he didn't intend to be funny. The other day he demanded to know why I drag him to so
many doctor's appointments. When I explained that the main reason I started taking him to so many doctors was because he cried
a lot for a child his age and I wanted to make sure that he wasn't suffering from depression, he rolled his eyes at me and
in a rather huffy tone of voice announced "Well, I cry a lot because people have the knack of upsetting me!"

After
I stopped laughing, I had a sobering thought. This wonderful child of mine, whom I love dearly, has such an amazing way of
viewing our world. It's rather fascinating to get inside his head and share the view. There is an article called "Educating
Carl" ( shown below) which illustrates my point quite well. In order to reach children with Autism or Asperger's Syndrome,
we need to be able to break out of our way of thinking. It is the adventure of a lifetime that many people never experience.

************************************************************

Educating Carl By Carl Daisy

As
parents of a child with autism, my wife and I early on came to the realization that there is nothing new that we can think,
do or say that hasn't been thought, done or said before. We are the benefactors of all the generations of parents/advocates
which have preceded us.

Good or bad,we can no more deny our debt to those who have gone ahead of us than we can deny
our heritage. We rail against the unfairness of autism, against the lack of knowledge about its pathology, about the social
barriers we must defeat--just as generations before us did.

Which brings me to my point.

Perhaps you have
read articles about a subject referred to as "nervous breakthroughs". As it relates to autism, it refers to a specific instant
in time when, because of some environmental pressure (usually parental frustration) a remarkable "breakthrough" occurs as
a reaction to the negative stimulus. Children who have never so much as uttered a word, miraculously speak...kids who have
any one of a number of aversions, suddenly overcome their terror and perform.

My son tends to talk to "no one" at
times, or, maybe he talks to everyone. I'm still learning. Nevertheless, in my infinite parental widsom (small w) I made a
habit of interrupting him with the question, "Carl, who are you talking to?" Talk to *people*!

Shortly after one of
these episodes, while we were still seated at the supper table, the phone rang. It was Grandma and Grandpa. Of course, we
encouraged Carl to say something to his grandparents.

The first few sentences were what you would typically expect
of any kid talking to his grandparents..."Hello, I'm Carl...we have to go to Grandma's lake to fish. (Although Grandma doesn't
actually *own* a lake, to Carl, going there with them was just as good). The rest of the conversation took off from there
to include neighborhood kid's names, Disney cartoon characters and his all-time favorite, "Honey, I shrunk the kids".

All
of this conversation was unfettered (at Carl's insistence) by any mutual conversation from the other end, namely Grandma and
Grandpa.

It was as if there really wasn't *anyone* on the phone at the other end.

It was at this point that
the "nervous breakthrough" occurred.

No, not Carl's...mine.

I had been so insistent that Carl "talk to people",
that it never occurred to me that Carl had no idea that there were *people* at the other end of that telephone. This was simply
an opportunity to "suspend" daddy's rules and jabber to this strangely shaped white object with a long, curly cord attached
to it.

I believe that I said something earlier about there being nothing new to think that hasn't already been thought.
Well, that may hold true for my wife and I, but not for Carl.

The most insignificant, trivial matter that we take
for granted, (where Mario goes when he falls off the Nintendo screen on the T.V.) is cause for all sorts of wondrous investigation
for Carl. Unfortunately investigating wondrous noises like the sump pump has also piqued his curiosity.

But therein
lies the source of my "breakthrough".

Carl, unlike his father or mother, is capable of *completely original* thinking.
It is I who must come into his world, appreciate it and him, if I am ever to share mine with him. Trust and mutual respect
are the cornerstones of this adventure. I call it an adventure, because I have truly come to both love and understand my son,
and let him take me on his journey at least as much as I ask him to accompany me on mine.

The child truly is father
to the man.

Here are some articles on Executive Dysfunction that you may find helpful:

Executive Dysfunction

The term executive functioning refers to mental processes involved in goal-directed activity. The work on this has been
primarily done in Neuropsychology but the implications for educators are important. Executive functioning has been rather
under-discussed in the school context as yet (stay tuned for my dissertation J) where these issues have been attributed to
failures in discipline rather than brain function. Executive functions most directly related to academic performance include:

- setting a goal, (understanding what the assignment or question is asking one to achieve)
- planning a course to achieve it,(remembering the procedure appropriate to the task)
- holding the plan in working memory while executing it,
sequencing the steps in the plan,
- initiating taking those steps and shifting between them,
monitoring progress for both pace and quality,regulating attention and emotional responses to challenges that arise,
- making flexible changes in the plan as needed, and
evaluating the outcome for use of the plan in a subsequent similar activity.

For most of us these processes occur without much explicit thought on our part, and we get better at executive functioning
as we mature. For some of us, though, these functions are disordered.Almost all people who have frontal lobe anomalies, like
Attention Deficit Hyperactivity Disorder, have difficulty with executive functioning. The medication they take (stimulant)
helps with focus and impulsivity control but it only helps, it does not solve the problem entirely. What comes to most of
us fairly unconsciously must be explicitly taught to folks with Executive Dysfunction. A combination of cognitive training
and appropriate accommodation can make an important difference to those who suffer from these anomalies.

But there is another element of the problem. People who have Executive Dysfunction tend to develop pretty negative beliefs
about their ability in the areas where their problems are most visible. Despite more than adequate intelligence they just
cant seem to do well in those activities. Since diagnosis of the problem has only been available in the last 7-10 years as
advanced technologies allowed new observations of brain function, many kids (to say nothing of parents and teachers) do not
get the understanding of whats going on for them until they have already developed defeatist beliefs and feelings about their
potential in the areas where their dysfunction shows up the most. For some this is in language-based activities, and others
find it in visual/spatial reasoning and math, although it does impact functioning across most of the areas of their lives
in one way or another areas as well.

So, all that said, how does this play out in terms of school and work for the individual? First, s/he goes in with the
feeling that s/he cant do it. With that ideation and anxiety, s/he attempts the work in front of her/him and effort is inconsistent.
You have to believe in the possibility of success to pursue it with even and sustained effort. S/he reads the assignment
or the question and either gets what it is saying/asking or not. If not s/he either gives up or applies a fairly random set
of fragmented understanding of the appropriate procedures to the problem. For example as s/he is reading an article assigned
for tomorrow's discussion s/he gives up several times only willing to give it another shot with encouragement and partnership.
Hitting an obstacle like missing pages, or something that doesn't make sense s/he loses the thread of the story and gives
up entirely. When it comes to written assignments s/he is focused on getting the answer right, rather than on the processes
needed to do that. Often the process seems like magic to someone with Executive Dysfunction. S/he may know the answer to
the math problem but have no idea how s/he came to know it. S/he often get the critique that s/he need to "show your
work!" But S/he doesn't, because s/he has not been clearly aware of how s/he did it.

Even if s/he has learned the formulae for the genre and has done assignments like the one s/he is currently attempting,
s/he has trouble holding them in working memory while she enacts the pieces of the process this time. S/he may apply the
elements of the procedure out of sequence, or skip steps without awareness of having done so. S/he has the sense that something
is going wrong but is not clear on what, and s/he has trouble monitoring her progress. Folks tend to cope with this uncertainty
and anxiety by going faster and adopting a blasé devil-take-the-details demeanor, using a sense of humor in the circumvention
of the trouble. S/he is truly shocked when the paper comes back with a grade that s/he knows is not the sort people as bright
as s/he is should be getting. All the adults around urge her/him to make a better effort and apply incentives and consequences
to help him/her achieve.

Provide the tools and strategies that work around areas of executive dysfunction, and provide support for him/her to use
them (thats where teachers, therapists, and the family come in); praise efforts even if the outcome is not optimal, inviting
her/him to tweak the strategy or tool use in a way that looks promising; the more s/he owns the methods and tools and fits
their use to her/himself the more likely they are to become an automatized part of his/her day-to-day practice.

Maintain firm, honest, and encouragingly constructive critique of her/his efforts. Sugar-coated critique tells a kid
that s/he is handicapped and a lost cause. Harsh, or overly meticulous criticism has much the same effect. S/he has issues
to work on just like the rest of us, and like the rest of us, s/he will do better with the clear demonstration that she is
respected and believed in.

The accommodations, tools and strategies we work out are for a person with Executive Dysfunction analogous to wearing
glasses for a person with an astigmatism. The difference is that over time the person with Executive Dysfunction's making
of these plans and using them will improve her/his executive functioning in problem solving, whereas the astigmatism is not
much changed by the wearing of glasses.

People with Executive Function Disorders

- Have difficulty with goal setting, often not grasping the point of setting them
- Have the sense that things either happen or dont, little awareness of process
- Have difficulty getting started on tasks, and shifting between them
- Tend to live in the current moment I know that now, but when I get to school it feels different
- Are unable to effectively reflect on past experience to plan for the future, thus common discipline measures, like incentives
and consequences, produce little change in behavior
- May continue to use the same strategy to solve a life problem, even when it has already proven ineffective
- May vacillate from impulsivity to rigidity, often with rising anxiety over things not turning out right
- Have difficulty adapting to change
- Rarely matches a strategy to a problem before trying to solve it
- Have low self-esteem and tend to be both unrealistic about their abilities, and very sensitive to critique
- Have difficulty overriding an emotion in order to behave appropriately or positively in a situation
- Have very low tolerance for failure or frustration. Will quit rather than try another approach, even when one is suggested.
- Tend to believe that accepting suggestions or help indicates weakness.
- Tend to locate the source of their troubles outside their control.
- Will skip steps in a procedure and be baffled about the reason an expected outcome was not reached.
- Have difficulty putting a sequence of steps in order, or even realizing that there are sub-goals to be accomplished
on the way to the finish.
- Believe they either know something or dont, have little faith in effort.
- Have difficulty shifting perspectives
- Need prompting to consider the feelings or views of others
- Fail to see the big picture, or the connections between details Just when I get good at what my teachers ask me to
do, they give me something new that I am no good at doing!
- See only the big picture, missing the trees for the forest.

These issues interfere with the persons success in life across all their areas of activity, but are most noticeable in
traditional school, and work settings. The good news is that through cognitive training and designing both tools and strategies
to suit the individual, most of the impact of these issues can be reduced or resolved.

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Living With Executive Dysfunction

Executive dysfunction involves problems with planning and executing tasks. Sometimes the "simplest" tasks, such
as grooming, are very difficult for autistics due to executive dysfunction. Since each person with executive function problems
will exhibit different strengths and weaknesses, the methods for dealing with these problems vary quite a bit. The methods
presented below work well for myself - they enable me to live independently in much the same way as a neurotypical. Without
these methods, I would be unable to do this. I do believe they can be helpful to many other autistics, although any method
chosen needs to be accepted fully by the autistic for it to provide help - and no single strategy will work with all autistics.
In fact, some strategies, including some of mine, won't work with most autistics.

General Strategies

Eliminate Clutter

Go through your stuff. Show no mercy. Dispose of anything you don't need. For instance, is there something in your closet
you haven't worn in a while? Get rid of it. Do you have boxes from your last move still unpacked, months later? Throw them
away (don't even open them - it'll make you want to keep the stuff in them!). The less stuff you have, the easier it will
be to keep it all organized! Don't hang onto things just because they might "someday" be useful. Yes, you may end
up spending some money later, but you probably wouldn't have been able to find it anyhow (and, thus, spent the money still!).

Simplify

Do you really need to do it? You should ask yourself this question before you even consider strategies to overcome difficulty
performing a task. Some tasks can simply stay undone. For your actual strategies, keep them as simple as possible. Don't try
to do everything perfectly - try to do what is needed.

Use Routines

Train yourself to follow a routine, with few deviations. The closer you follow a standard routine, the more likely you
are to remember it (this is true for both autistic and non-autistic individuals). The more frequently you use a routine, the
more likely it is to become a habit.

Small Jobs

Don't attempt big jobs. Only do small jobs. Instead of "cleaning your house", "clean the corner of the
living room." Cleaning the corner of the living room is part of cleaning your house. But, by breaking the task into small
pieces and only doing one small piece at a time, you will be attempting jobs which can be achieved in a very short amount
of time and in one setting. This will also reduce the possibility of getting interrupted in a task, which can be very bothersome
to some of us. This technique is used by professional project managers in the corporate world - it is recognized that major
tasks can not be scheduled or performed satisfactory, but small jobs can.

Be Realistic

You won't be able to do things the same way an NT will. You may have to be content with doing less and taking more time
to do it. That's okay, though. Figure out what you want to do, and then think hard about it. Ask yourself, "Will I be
able to do this with just a little prompting or help?" If not, then solving the executive function difficulties probably
won't solve the problem without you first solving the other underlying problems. In addition, your strategies will not motivate
you to do a task you don't want to do. These strategies will only help you perform tasks that you want to do.

Be Pragmatic

Get rid of strategies that don't work. If, after a week you aren't able to establish the strategy, it probably won't ever
actually work. If, after a month, you are still doing the strategy, you will probably be able to keep doing it, as a month
is usually long enough to get over the initial enthusiasm that often makes doing a new strategy much easier initially. No
matter how wonderful a strategy is, if you can't or won't follow it, it is no good for you.

Get Help

Some people find that having others call and remind helps get a task done. However, others claim that such reminders only
reinforce inertia, so this may be very individual specific.

An externally imposed scedule, such as the kind of schedule a student in formal education must follow, can help start
all other routines, and improve overall functioning.

Set Aside a Workspace

A specific area to do a specific task might be helpful.

Checklists

Use them for many routine tasks, such as doing certain tasks, getting dressed and getting ready for bed. I also use them
to remind myself of certain tasks.

Personal Digital Assistant (PDA)

A Palm Pilot can be used to help organize time. The most useful features of the Palm are the to-do lists and calendar.
Some Palms have a "silent alarm" feature. Reminders can be set to alarm by vibrating instead of beeping, which allows
you to get your reminders discreetly and without disturbing others at work, in a class or event.

A possible alternative is to use the Casio Databank 150 watch. This watch can have 100 alarms, each of which can be set
up to a year in advance. This is probably a very good alternative to the Palm, especially for people who don't want to carry
a full-sized PDA.

Specific Strategies

Checklists can be made for:

Taking medication
Watering plants
Feed pets
Remembering to Take Things to Work (include all things needed)
Taking Out Trash
Washing Dishes
Remembering to Eat
Choosing Clothes
Paying Bills On-Time (http://www.PayMyBills.com can help here. It costs a few dollars per month and you can schedule payments
such as rent to automatically be paid.)

Do you have a student who seems incredibly lazy? Intentionally forgetful? Absolutely unmotivated? Deliberately late? Do
you feel like a broken record? Constantly asking where his homework is? Constantly asking him to clean out his desk? Constantly
asking her to pick up stuff around her desk? Do you have a student who is chronically distracted? Are you repeating directions
to get the student back on task when he gets distracted? Do you have a student who knows the information but cant seem to
communicate it to you in a logical sequence? Do you ask a question and get an answer thats related but not quite connected
to the question? If so, it might be that the student is not using these behaviors intentionally.

One of the least studied and most frequently overlooked contributors to academic and behavioral problems is a problem
in the frontal lobes of the brain known as executive dysfunction. Students with executive dysfunction have problems of a neurobiological
nature that particularly affect planning, flexibility, organization, and self-monitoring. These students may have difficulty
picking a topic, planning the project, sequencing the materials for a paper, breaking the project down into manageable units
with intermediate deadlines, getting started, and completing the activity. And because these students frequently underestimate
how long something will take, theyll generally leave the project until the night before it is due. Just imagine how difficult
it would be if you had trouble organizing your time, materials, belongings, thoughts or any combination of these!

If you believe your student has executive dysfunction (also called executive function deficitscalled executive because
the tasks are often the responsibilities of a company executive), consider helping the student to organize himself. Begin
by developing a relationship with the student that is emotionally supportive. Emphasize that you want the student to succeed.
Help the student to understand his problems and that there are strategies he can use to organize him/ herself. For example,
you could say, Kids with executive function problems have difficulty in certain areas. There are many ways you can help yourself.
Lets talk about the areas and supports. Then you can choose which ways to help yourself. Then describe the following potentially
troublesome areas and potential supports that are identified in the shaded area.

Managing Time

Use time management techniques such as the use of checklists, prioritized To Do lists, and prioritizing assignments.

Estimate how long a task will take and then check on the accuracy of your estimate.

Plan for more time to do a project that you think you will need.

Break long assignments into chunks with time frames for completing each chunk.

Establish intermediate deadlines for big projects with your teacher and show her the project at these deadlines.
Use a word processor and time management software such as the Franklin Day Planner, Palm Pilot, Lotus Organizer.
Write the due date on the top of each assignment in a brightly colored marker.

Managing Space

Ask the student to identify ways he would like to organize himself.

Have separate work areas with complete sets of supplies for different activities.

Schedule a weekly time to clean out your desk and book bag (in school).

Managing Materials

Leave a large supply of pencils/pens in the class-room with the teacher.

(For younger students) Have one notebook in which all assignments are recorded. Ask your teacher to check the assignments
at the end of each day to insure that the assignments are recorded properly and that the necessary materials to com-plete
the assignments are packed in your book bag. Also ask her to make sure the due date for each assignment is written at the
top of each page.

(For older students) Use a three-ring binder with organized sections enclosed by a zipper. Head-ings could include Assignments
Due/Date, To Do Tonight, Ongoing Work. Use dividers in the notebook that are color-coded (e.g., Red for assignments that must
be done right away, yellow for those due at the end of the week, etc.).

Color code materials. Cover the textbook for one course in the same color as the notebook for that course. Use the same
color coding to prioritize assignments.

Establish a daily routine for school organization and include a written version of it in the notebook (e.g., turn in homework
at the beginning of classes, get out your paper,text,pen and check blackboard for assignment, prepare to leave class three
minutes before it endspack books, papers, etc., turn in assignment book for checking and initialing at the end of each day,
etc.). Use this same approach at home (e.g., do homework at a certain time, have parent initial homework, clean out book bag,
check for necessary supplies for school).

Obtain two copies of each textbook. Mark one To be left in school and the other To be left at home.

Managing Work

Use a checklist to guide you through an independent assignment. Include items such as: get out pencil and paper, put name
on paper, put due date on paper, read directions, ask teacher to further explain if needed, do work, put work away in note-book
in appropriate section (e.g., to do tonight, to do this week), write assignment on assignment sheet, get teacher to sign,
take home and complete work.

Finally, have the student identify which strategies she would like to try using and get started. Consider meeting with
the student after a week to evaluate her use of the strategies. Be sure to praise the students progress rather than focusing
on areas of continued disorganization. In addition, suggest that students family be included so that they can help him or
her continue the strategies at home.
As the educator you can support the student (and others) by making some changes in the classroom. Some suggestions you
can implement include:

Maintaining a highly structured classroom.

Using a written (visual) schedule to keep the student
focused and on task so that he or she can complete tasks as independently as possible.

Giving fewer problems/questions on worksheets and/or creating boxes next to each question so the student can check it
off as it is answered.

Making the classroom as distraction free as possible (away from windows, doors or favorite activity areas).

Keeping assignment folders in specific and consistent places.

Using a visual calendar for both school and home to help the student anticipate events.

Using a visual timer to help the student understand time constraints.

Also, if you suspect a student has executive dysfunction, consult with your school psychologist. While executive function
deficits are most commonly associated with Autism Spectrum Disorder, they also are known to occur in students with ADHD, Fragile
X Syndrome, conduct disorder, obsessive-compulsive disorder, traumatic brain injury, and schizophrenia. Although there are
currently no agreed-upon protocols that constitute a battery of tests for executive dysfunction, several tests have been used
in research that seem to tap into aspects of the disorder. These include the Matching Familiar Figures Test (Waterhouse &
Fein, 1982), Wisconsin Card Sorting Test, and various computerized tests.

Teach your student with executive dysfunction to organize himself. In addition, provide support by making some adaptations
in your classroom and in your interaction style. Remember that students with executive dysfunction are not unmotivated or
willfully engaging in problematic behavior. They really cannot organize and flexibly solve problems themselves without appropriate
supports.